Down’s Syndrome

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.


  

Love love love part 2

~ Vickywoo ~ 5 Comments

Just a list of things I love, that Audrey does.

The way she dances to police sirens, lorry reversing beeps and builders banging (basically whenever she mistakes those kind of sounds for music).

The way she obediently hands things to me when I ask her to (how long will that last??).

The way she pats you on the back with her hand when cuddling and says “Ahhh”.

The way she blows kisses with a dramatic flourish.

The way she does something she’s not supposed to (emptying a pack of baby wipes, playing with our shoes or electrical cables) and says “Noooo!” whilst doing it.

The way she sucks her toes.

When she shuffles over to my feet, looks up at me with her arms spread wide and says “Ahhhh” – her way of asking to be picked up.

The way she points in her mouth and says “teeth” to ask to have her teeth brushed.

They way she claps and says “Yeah!!!” With such enthusiasm at the end of a song at music class or after some good drumming at our drumming group.

Pretty much every word she tries to say – her speech and language is coming along so well and I’m so proud of how hard she tries with everything from “sneeze” to “fish”.

Her lion roar.

The fact that at just 2 years old, she already has a favourite book (A Bit Lost) and that I don’t mind reading it 3 times before bed.

Bless you gorgeous Audrey for making everything little thing so loveable!

   
 

Audrey’s 2nd birthday party

~ Vickywoo ~ 1 Comment

I realised I hadn’t shared Audrey’s birthday party photos… So here they are. We had planned a party in our local park, but due to the great British weather in July, we had a party in a pub!

Owl cake baked by Daddy.

   
    
    
 

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.

  

Bragging

~ Vickywoo ~ 4 Comments

I wanted to list some stuff Audrey can do, I’m not really bragging, just want to remember how well she’s doing and have an excuse to document small things we may forget.

Don’t get me wrong either, I am fully aware typical children can do all these things and much, much more and that other kids with DS might be ahead of us too, but I am super proud of every little thing Audrey has achieved. The bar was set low when we realised she had Down Syndrome (sad but true), but those low expectations mean BIG celebrations when she achieves. We are a family of clappers and cheerers!

Ok, so signs-wise Audrey knows loads, but these are words she also says whilst signing:

Dada (putting this at the top as it is her most successful word-sign combo!)

Mama 

Banana (narna)

More

Cake (don’t judge! She has rice cakes and pancakes a lot, so associates the word with those things as well as the odd nibble of Mummy’s lemon drizzle!)

Audrey can sign (without saying):

Bibi (Grandma)

Finished

Food

Blueberries

Yoghurt

Milk

Biscuit

Water/drink

Nappy

Where

Cuddle

Hello and goodbye

Baby

Bird

Dog

Flower

Bus

Bath

Sleep

Brush

Glasses

Monkey

Elephant

She also signs the actions to Incy Wincy Spider, Row Row, Twinkle Twinkle, the Wheels on the Bus and a few other songs.

She can high five and fist bump, blow kisses, give tickles and reach out to be picked up.

She knows her feet and toes, her nose and her head.

She can wash her face and hands with a wet wipe (although she is started to just suck on the wet wipe!).

She loves to take off and put on hats and glasses, she also likes putting things in and taking them out of boxes or bags.

She can brush her hair and ours. She can feed herself with a spoon (but doesn’t like to do it!), she mostly eats finger foods.

She can hold a beaker and drink (she stopped having a bottle around 18 months when she decided she no longer wanted it).

Physically, Audrey definitely suffers from low muscle tone. She is extremely flexible and started bum shuffling properly at Easter time. Now she is into anything and everything. She has only just started to show interest in standing and it is a million miles away from the stiff standing typical children attempt. She is pushing onto her feet, with us holding her under her arms and can stand for a second before wobbling out of it. It still feels like a huge step forward, walking is the next big thing to master… the day that I can buy her shoes will be a great day indeed 🙂

   
 

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…

   
   

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.



The gap widens…

~ Vickywoo ~ 1 Comment

When Audrey was a newborn, we over-used the phrase “she’s just a baby”. Because at that time, her needs were not very different to those of her peers. She felt different (floppier) and she had a cannula on her face for oxygen, but aside from that… It was still all naps, boob, nappies, bottle, cuddles…

Audrey was actually the first from the NCT crew to roll from her back to her front. At that point I thought she’d probably hit all the milestones within weeks of her baby friends. I was sure we had a baby with Down’s Syndrome that would out-perform any other.

Soon they were all rolling… And then Audrey was a bit behind on sitting up and holding her bottle/feeding herself. Then they were all crawling/bum-shuffling and she’s finally mastered sitting up, but even so, she wasn’t that far behind. But before you know it, they are all walking. They are all saying words; “Mama”, “Bye bye”, “Down”, “Dog”. Their hands are very purposeful… there is a marked difference.

Of course, all of the NCT mums are great. They play down their child’s achievements; “Oh he’s still not that steady on his feet..” or “He says ‘Mama’ for everything”, but bless them, their kiddies are doing what they should be doing and these are exciting milestones. I’m pleased for all of them that they have toddlers (bizarrely I have a toddler, but she doesn’t toddle). I’m (at times) genuinely relieved I don’t have to run after a walker yet. But of course there’s a little ‘pang’ there. I’d love for Audrey to be running around with her friends. I’d love for her to purposefully grab the drum and hit it with conviction (rather than some tentative taps here and there). But at the same time, I feel… Ok. I feel… like Audrey’s slow pace and our expectations mean that every little new thing she does is so exciting.

The gap has widened and that’s a bit scary, but in many respects, it’s not as hard as I thought it would be.

Today I watched Audrey cuddle a teddy, hand it to the speech and language therapist (who would then have a cuddle and pass it back), cuddle it again and so on. I just sat there thinking “she’s so clever!”. In fact, there isn’t a day goes by where I don’t think “she’s so clever”. She amazes me everyday.

I have taken her to a music class these past two weeks and sat there, filled with pride. She just loves music so much and she dances so creatively and enthusiastically. I basically sit there wanting everyone to look at my daughter, because she is the greatest dancer.

We also go to a weekly special needs group (where she cuddled the teddy) and Audrey works on development. She achieves something new every week. She always makes me proud. This week, she finally made a choice. They always offer the kiddies two toys and make them choose – Audrey would always either shake her head and refuse or just sit there blankly. Finally, this week she selected the maracas over the sparkly stick and then boy oh boy did she shake those maracas!!

I still kind of have to pinch myself about all this… that baby that popped out as a complete surprise… all those worries… all the negative thoughts… she makes me so happy and so proud. And every day I tell her how much I love her and how clever she is. Amazing.

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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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