Awareness

Over sharing ?

~ Vickywoo ~ Leave a comment

There are so many blogs out there that write about motherhood. We are living in a world of ‘sharing’ (some might say ‘over sharing’) and we can all identify with our shared experiences of giving birth, breastfeeding, formula feeding, weaning, nap times etc. Such is the wealth of available content out there, I can even find relatable posts on the shock arrival of a child with Down’s Syndrome or what it’s like to have a baby on oxygen.

I am aware of some parents (none of whom I should add, have criticised me), that are anti-social media when it comes to sharing pictures of their kids. I’ve had brief conversations with some about the phenomenon of being a baby in this day and age – your entire life shared with the world. From scan picture to messy weaning, if all this is public, what kind of nightmare will this be when he/she hits teenage years??

Personally (as you may have noticed), I have no problem with Audrey’s life being public. Facebook is a great way for friends and family to see how she is growing, Instagram has connected us to lots of amazing families around the world and Twitter… Well I share all my Instagram posts on there automatically and sometimes forget about it to be honest.

I love the way we are part of this online community; I see little faces with DS every day, so it doesn’t feel like Audrey is strange or different – there are so many families like ours out there and they are sharing their ups and downs so that we all feel supported.

I cannot imagine being a mum pre-Internet; how terrifying! That said, being a mum in the post-Internet age is also terrifying… I won’t address mummy forums again (ugh), but we do have access to a lot of information now. Useful information; yes, but also plenty to confuse us, worry us and make us question ourselves. We have a glimpse into the lives of many other mums and whilst they can inspire and support our journey, they can also cause self-doubt and envy.
I’m repeating this phrase (I’ve definitely mentioned it here before), but it resonates well with the mother of a child with special needs; “Comparison is the thief of joy”. And I have to repeat and remember this regularly, as from time to time I will see a child younger than Audrey achieving more than she has or a mother looking stylish and clean whilst juggling kids and it’ll make me feel crap.

So onto our next level of exposure… In my previous life (well just last year actually) I worked for a TV programme distributor and I met a producer making a series about young people with Down’s Syndrome. The series is called The Specials (www.the-specials.com) and has been on television in the US, on Oprah’s OWN network no less! Katy and I have stayed in touch and recently she approached me with the idea of filming us – Audrey being the star of course, but getting a perspective from a “young” family.

Do I enjoy seeing myself on video? No. But will I take part? Yes. Because this feels like such an amazing way to contribute to the Down’s Syndrome community and beyond. A chance to show that our life doesn’t differ from “typical” family life as much as you might think. And to have footage of Audrey that’s not filmed on an iPhone will be fantastic.

I’m embracing every chance I get to show people what life with Audrey is like – because I know that the pre-Audrey me would have had a very different picture of life with a special needs child. So I want to reach all mothers and potential mothers (and fathers and grandparents and uncles and aunts – ok everyone), to take away some fear and show that everyone’s “normal” is different. This is our “normal” and it’s really rather awesome.


  

Audrey turns 2!

~ Vickywoo ~ 2 Comments

Ahh that time of year where we reminisce about Audrey’s arrival and look at how far we’ve come.

Well, we’ve come a long way since the shock of a c-section and an extra chromosome! 

Audrey is the best thing that ever happened to us. I think people under estimate the power of love (apart from maybe Jennifer Rush and Frankie goes to Hollywood, they seemed to get it). 

The love we have for Audrey just grows and grows. I always thought love for a child was instant and unchanging, whereas it’s actually been more of a slow burn. A little love at first, then more and more and more; and, as they become more of a ‘person’, the love starts to go through the roof!

I basically want to eat her up I love her so (plagiarised from Maurice Sendak, apologies).

What I find frustrating, is that I can’t wave a magic wand and make anyone about to become a parent to a child with Down’s Syndrome have this feeling we have now. The pride, the joy and the genuine contentment we feel having Audrey as our daughter. Not wanting to change her, being so proud and so much in love.

I just hope that sharing our lives will help someone out there somewhere feel better – whatever stage they are at (pre-natal diagnosis, shock arrival, a few weeks or months in) and just take away a bit of that stress involved with looking to the future. Don’t project too much, don’t start thinking months or years ahead – enjoy that bump/baby you have right now and just know that they are going to be awesome. Fact.

  

Trip trap

~ Vickywoo ~ 5 Comments

Yesterday I had my first experience of being targeted by an Internet troll. 

It’s not something I was hoping to experience, especially when the target was really Audrey, but I’m glad we’ve got it out of the way.

Several months ago one of the DS families I follow on Instagram had some nasty comments on a photo; something along the lines of “you should have aborted this ugly baby”. And it made my stomach churn. How could anyone say such a thing? Why would they say it? And it scared me and made me feel concerned about sharing pictures of Audrey.

Audrey’s troll left a comment and tagged another account, so the two different accounts had a little chat back and forth on one of her pictures. However I don’t know which picture and I didn’t understand all the “banter” or “abuse”, because they used code or strange slang and then deleted it all. But I had seen the notification on my iPhone, so I could still look at the comments even after they’d gone from Instagram. It wasn’t so bad. Account A says to Account B; “Aww it’s a cute retard”. Account B says “jcl XD” And there’s a bit of random letters and then “Bye”. I found both accounts and blocked them, so that was that.

But I do feel a bit… “exposed”. I share our life with Audrey to spread a positive message and I’m usually filled with pride and a warm fuzzy feeling from all our “likes” and comments. The trolls are rare, but they are still out there… 

Of course I won’t let them stop me sharing, Audrey has more fans than trolls! But if any potential trolls are reading this; please remember there’s a real person behind the computer screen/iPhone/tablet and they might be genuinely hurt by your “funny” comment. We are a real family and share our lives online to show what love looks like – it doesn’t see disability, that’s for sure and it would never, ever, use the word “retard”.
My beautiful little girl (doesn’t she look grown up??):

  

Does size matter?

~ Vickywoo ~ Leave a comment

So, people are always interested in your child’s age for some reason. It’s the height of small talk and will inevitably lead to some comment on size and developmental milestones (“Is she walking?” Etc).

I’m interested to know if mums of “typical” children ever feel like a comment on their child’s size is a criticism – if it ever makes you feel like you’re doing a bad job?

You see, Audrey is small. The last time she was weighed, she was travelling around the 9th curve on the Down syndrome chart. For those of you who don’t know, people with DS generally grow slower and are smaller than typical people. So the 9th on the DS chart is smaller than the 9th on the typical chart. 

She is 22 months old, wearing mostly size 9-12 months (just moving to 12-18). So basically she’s the size of a one year old and is nearly two. This means people are usually quite surprised by her age or that they guess her age and are way off. In the early days I definitely felt like I was to blame. It was my breast milk feeding her and I so wanted to make her grow big and strong, but she just kept slowly crawling up the lower curves. She was refluxy, so it was tricky getting her to gain weight, but once we started her on solids, she gained some good chunk. Unfortunately she was still weeny and yeah, it’s great to be petite if you’re a lady, so I’m sure this won’t be an issue in time, but right now, whenever I meet people (bus, supermarket queue…) and they say “Ahh, she must be about 10 months?” and I have to say; “Well, no, actually she’s 22 months”, I feel uncomfortable about it. I feel like they are wondering why on earth is this kid so small? And it’s often followed by the question “Was she premature?” and then I have to say “No, actually she was 6 days late”. Queue another surprised look.

Audrey’s size has skewed my idea of what size a baby should be, so I can’t really enter into the guessing game when meeting a new baby, because I have no idea what age to go for. In fact, how does everyone else know the average size of a 10 month old?! I didn’t know pre-Audrey and I certainly don’t know now. And why do I think that big bouncing baby = successful mother? 

She is a greedy piglet and we feed her a lot. In fact it was Audrey’s ‘decision’ to drop her nighttime bottle in favour of a snack! Ha. 

Anyway, if you meet someone and enter into the small talk of baby age, please try not to be overly shocked by their answer (whether the baby seems tiny or huge to you), either way, I’m sure the mummy won’t be thrilled that you think their child is mahoosive/minuscule! Thanks!

Audrey with a (giant!) teddy and her friend Edith (over a year younger than her!)….

  

Aim of the game 

~ Vickywoo ~ 2 Comments

Today I am attending a Mothers Meeting (http://mothers-meeting.com). I got my ticket after a friend vaguely explained the event to me and said I had to go as she is on holiday and can’t make it.

As far as I can gather, it’s a networking event for like-minded mummies; those of us that like clothes and coffee and design and cool stuff. From what I’ve seen on IG, a lot of the mums attending are creative types with their own businesses. I’ve had an email that says we will all have a little opportunity to say something about ourselves(!), so I thought I’d talk about this blog. This is the closest thing I have to ‘work’ at the moment!

So it got me thinking, what is my aim with this blog? How will I describe it? It’s not just mummy ramblings… Honest!

My main aim is sharing the ups and downs of life with a child with Down’s Syndrome. More than anything I just want people to understand that is nothing like you might imagine. 

Imagine having a disabled child. Depressing isn’t it? Picture the mother of a child with special needs. Is she mumsy? Is she Florence Nightingale?

I guess I want people to know it can happen to anyone, rich or poor, cool or uncool, caring and uncaring. Kids with special needs are born all the time and the people that have them, love them and do normal things.

One thing that always gets me a bit ‘ranty’ (apart from too much red wine), is the fact that 9 out of 10 women in the UK (and I believe it’s the same in the US) abort after a near-certain Down’s Syndrome prenatal diagnosis. So the majority of kids with DS that exist were surprises. 

I guess there are two reasons to raise awareness; 1. To support those of us that had the surprise (share our feels of disappointment, grief, guilt, confusion and how we moved on) and 2. Help women who receive the prenatal diagnosis make a decision based on what it is really like to have a child with Down’s Syndrome (it’s not as bad as you imagine! I promise you’ll love them and they’ll be amazing!).

I appreciate we get a lot of love from pro-lifers, but Audrey isn’t here because we are anti-abortion (although I don’t think we would have aborted, I’m not anti-abortion in the right circumstances). But I do think it’s terribly sad that couples might make the choice to abort a child based on fear and a stereotype of what ‘disabled’ or ‘special needs’ is.

I mean, ‘special needs’ isn’t cool. It’s not sexy or fun, it sounds awful to me. I’m hoping our Instagram and blog can help people realise that it can be cool! And yeah, maybe one day Audrey will want to be sexy (and we’ll still feel icky about it, just as my parents did when I started wearing mini skirts and crop tops), but a part of me will also be thinking “Yeah, go Audrey!”, because she can be whoever she wants to be and that’s exciting!

Today I’m going to meet some cool mums and (hopefully without coming across as a ranting crazy), bang the drum a little for Down’s Syndrome. Let them all know that it’s not the end of the world and that it can be cool. I mean, look at our cool little dudette…

   
   

A day in the life

~ Vickywoo ~ Leave a comment

So I may have said this before, but having a cute kid with lots of hair and glasses is like stepping out with a celebrity. She gets so much attention. 

Today this is roughly how our day panned out…

9am: off out to catch a bus to our group for babies with special needs. See bus, do an enthusiastic sign for “bus”, wave the bus goodbye and see smiling faces on the passengers who have witnessed the joy at the event.

(We had at this point, just missed our actual bus, so we popped off to pick up a coffee from a favourite local trendy place).

9.15am: wave at beardy man in queue, get a wave back. Marvel at pastry treats behind glass (“Wow!”). Wave at everyone and anyone, receive wave back from man that Mummy had incorrectly pre-judged as grumpy.

9.20am: back at bus stop. See dog, sign “dog” and attempt to reach the dog from the sling position. Mummy thanks the man for stopping. Drunk man passes and compliments Audrey’s “bins”.

9.30am: get on our bus. Wave at people out the window, dance when the bus is stopped in traffic and the engine sounds like music (to Audrey’s ears).

9.35am: bus stops for a while by the shopping mall. Wave at man who isn’t looking until Mummy points out a willing participant who is watching from the bus stop. Waving back and forth is fun, but starts to get a bit uncomfortable once we are stopped there for a while. Mummy looks in opposite direction.

9.40am: motion of bus too much, fall asleep on Mummy and miss a dog that gets on the bus and sits right by us.

10am: arrive at reception for baby group, bum shuffle to the centre of the room, wave and say “Hi Daddy!” to the two ladies in reception. Throw ball.

10.03am: enter room for Early Stages group, greet all nursery nurses with a wave and “Hi!”, see tent filled with lights and say “Wow!”.

10.03-11.30am: greet any arrivals with a wave. Play at every station, but not for too long, lots of bum shuffling to do. Successfully make a choice at singing time (choosing is hard, Mummy advised offer row row and it’s a no brainer). Enthusiastically take part in all songs, clap and say “Yeah!” at the end of each one. Mummy beams with pride.

11.30am: have lunch. Make lots of yummy noises and copy speech and language therapist when she mimes rubbing her tummy. Everyone marvels at the signing.

12pm: bum shuffle over to the mirror and amuse everyone with babbling. Say what sounds like “Hi ladies!”. Leave with Mummy, wave bye bye and blow big kisses!

12.10pm: wave at girl at bus stop, who waves back and I think remembers us from last week.

12.20pm: get on bus, lady sits next to us and chatters at Mummy, wave to lady. Lady compliments eyelashes (Audrey’s, no one cares about Mummy’s anymore), marvels at Audrey’s old lady name.

12.30pm: fall asleep.

1.30pm: wake up, surprised to find we are on another bus. Stare at lady next to us as she has amazing sunglasses and a crazy hat on. Blow her a kiss.

2pm: arrive to play in waiting room ahead of eye test. Wave to everyone in room.

2.05pm: have to look at a light and some tiny toys, do ok, but not thrilled about it. Have eye drops and cry. Lady says Audrey really looks like Mummy when she is about to cry. Hmmm. Wave goodbye to lady as if she is a best friend and not the mean lady who put drops in eyes.

2.20pm: more crying in waiting room as older child knocks down a tower of bricks. Smiles and clapping once Mummy sings.

2.40pm: more eye test annoyance. Shake hands with eye lady. Lots of wriggling and noises of discontent. Eat rice cake to recover.

3pm: bus home, not feeling the best. Lots of thumb sucking and cuddling with Mummy.

3.30pm: in the shops. Lady comes to compliment glasses. Give her a smile and wave despite feeling under the weather.

4pm: more waving in the supermarket, lots of comments about those lovely rosy cheeks (ezcema!).

4.15pm: get home, play with toys and have some down time after all that waving.

The end.

No photos taken today, but this was last week skipping radio channels for our daily dance party…

  

Update: here she is today. Red cheeks and all:

  

Friends and Family

~ Vickywoo ~ Leave a comment

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…

   
                  

On the move!

~ Vickywoo ~ Leave a comment

Watch out world, Audrey is on the move! 

It’s been a surprisingly underwhelming transition from random bum-shuffling (pivoting in a circle, sometimes resulting in movement by chance) to purposeful bum-shuffling (moving her legs to travel straight ahead to reach a specific target – usually a shoe or rucksack or the coffee table).

I expected whoops and a fan fare, but we were more like “is she moving forward properly?” And it was tested with her interest in a shirt sleeve dangling from the ironing board (as you do). Ted kept moving back and Audrey kept getting closer… Then we knew. Mobility was here.

When Audrey first rolled, I was cheering like crazy person and filming her to capture the milestone. I decided she was a genius and I wanted everyone to know what she had achieved at that very minute. She was ahead of her “typical” peers, it was very exciting.

Fast-forward to now. Her “typical” buddies are all walking (of course) and have been for about 8 months or more. Some where along the way the pressure for her to smash records and be a genius baby wore off. I guess I realised that one day it just won’t matter when she started moving. She’ll be walking alongside me and I’ll probably have a few little moments in my head (“yippee hurrah she’s walking!!”), but eventually it’ll just be something she does. I mean, it can be a little odd having a toddler who doesn’t toddle, but you get used to it. She does other things that are pretty great, like signing lots of words, dancing like a pro and an amazing elephant impression.

But now she also moves. Which is pretty major, so why the lack of fanfare? Well, she’s not very fast, so it’s not causing major stress in terms of baby-proofing (yet), in fact, she can sit still for quite some time when occupied by toys or music. I guess I also feel less inclined to prove she’s “achieving”, whereas before I wanted to be sure people knew she was doing well and progressing, I think I’m more comfortable with who she is. Life isn’t a competition; not even for kids with developmental delays. We’re not trying to beat her DS peers to the finish line. It still feels like Audrey is growing up ridiculously fast, even though she’s traveling at a much slower speed than typical kids, so why would I wish this time away?

Anyway, in the interests of full documentation, Audrey started her purposeful bum-shuffling on Saturday 28th March 2015.

   

   

World Down’s Syndrome Day 2015

~ Vickywoo ~ Leave a comment

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.



Blessed

~ Vickywoo ~ Leave a comment

When Audrey was a newborn, I read other parents’ accounts of having a child with Down Syndrome and, well, I thought in some cases they were lying. Or at least kidding themselves by piling on the positivity.

“Our child is a blessing” or “we wouldn’t change anything about our child” or “he/she is simply perfect”. I thought come on, you would change the Down Syndrome! And you know they’re not perfect!

But guess what? They were just further down the path than us and now I know what they know, I’m all over this positivity and “blessedness”!

But let me be clear, Audrey isn’t a blessing to us because she has DS, she just plain and simple is a blessing. She’s our daughter, we made her and ok, something “different” happened in the making and she got an extra chromosome, but that’s just part of Audrey.

When I look at her, I am overwhelmed by how much I love her and how perfect she is for us, for our family. I genuinely wouldn’t change her. Yes, I want to wipe out health issues, prejudices, difficulties… But if we took away the DS, she wouldn’t be the same baby and we love this baby, just the way she is. She’s perfect. And yes, I know that really there is no such thing as perfect… In fact, as I said, when I read other families call their child with DS “perfect”, I felt a twinge, an uncomfortable stab… Thinking, c’mon, how can you use the word perfect?!?

But I get it now. How can anyone? What is perfection? Does it even exist?

Audrey isn’t really perfect. She had terrible reflux and used to puke all over us. Sometimes she gives wonderful long kisses; covering us in snot. Sometimes she wakes up at 5am. She pulls my hair. She dribbles a lot. She has rough patches on her thumbs from over-sucking.

But she is amazing. She fits into our family and brings us so much happiness. We are deeply in love with her and wouldn’t change her for the world.

So there. Gushy positive Down’s Syndrome family believes they are blessed. Because they are.

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