Author: Vickywoo

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.


  

Sentimental nonsense

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I have a tendency to hoard stuff, often through sentimental attachments. I love to reminisce, I love to cling to the past and I revel in a bit of reliving moments, even sad ones.

We are moving and clearing out mountains of “stuff”. There is so much crap in our flat and I recognise that most of it is here because I can’t let go. Letters from 20 years ago, magazines from my youth, stuffed toys, old books, plastic nonsense, even ancient make up… None of it is easy to just throw away, but it needs to be done and I am getting better at culling all the crap-o-la.

A strange thing about moving is the emotional attachment I have to this (rented) flat and the neighbourhood. This is where Audrey was conceived (sorry, too much info?), where she grew in my belly and where she came first after her little 3 week stint in hospital. Her first trip outside in the buggy was to St Ann’s Well Gardens (a park, less than 5 minutes away) and it’s also where she had her 1st birthday party. When we move, we’ll have a different local park. A different shop I’ll nip to, to get something for dinner or Audrey’s endless supply of bananas. A different bus stop to take us to her various appointments at the hospital or children’s centre. And what’s even stranger, all these silly things I’m clinging to… But Audrey won’t remember any of it! This will be a place we say we used to live, but it won’t mean anything to Audrey.

I realise that it won’t be long before we have forged new memories in our new house and new local park. The staff at a different Co-op will coo over her and wave hello back, I’ll wave at a different coffee shop owner that I’ll pass several times a week… But it’s going to take a while to get to that point.

What’s weirder is that this move is likely to be where Audrey will start school (eek!). Yes it’s a couple of years off, but we plan to bed in and save save save (ultimately to buy one day), so for now, this home will be the home and will dictate Audrey’s school friends. When she was first born, I dreaded school for her… But now… I’m so excited. 

Yes, I know things won’t always be peachy, but I have this vision of her early days and the vision is; she rules the school. High fiving all her buds… getting them in on dance routines in the playground… books books books! I’m pumped about Audrey showing a whole new bunch of kids how cool a kid with DS can be.

And so we move on (well in a few weeks anyway) and I’m praying for that “Indian summer” that grants us some sun in September, so we can enjoy our new garden!

As always, I’ll end with some pictures of the beauty… One below with Great Grandma (the inspiration for her middle name; Emily), who turned 96 recently.

   
 

Quick revamp

~ Vickywoo ~ 1 Comment

Hello loyal readers!

Just a note to state the obvious – I’ve revamped the site ‘theme’. I wanted something a bit cleaner and trendier, so I hope you like our new look.

More Audrey posts of joy to follow this week, I promise…

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.

  

Stuff and things 8

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So I’ve started a new job. I’m working 2 days a week and Audrey is at nursery, which thankfully I know she loves.

We had parents’ evening last week and whenever I told someone (workers at the nursery) that I was Audrey’s mum, they would say “Hiya!” And blow kisses. And tell me how socialble she is. I enjoyed parents’ evening a lot, because I felt so proud, I know that Audrey is a character and very memorable!

She is moving up to the transition room before ultimately joining the over 2s, which is scary as they’ll all be walking and Audrey will be this tiny bum shuffler amongst them! But I do want her to move with her peers and I know it’s good for her to see typical toddlers her age – great motivation to copy them when she can. The sad thing is, she’ll be changing key worker and that’s just hard because we know she is attached to her current key worker (that’s the whole point, obviously) and I’ve really grown to love that bond they have. But onwards and upwards for Audrey!

Last week we also had two bits of good news- a thyroid test came back normal and Audrey passed a hearing test with (almost) flying colours! She couldn’t be completely signed off from hearing checks, as she has a small amount of fluid in her ear, so they need to check her again in the winter time (when colds etc are worse). Fingers crossed we’ll escape the need for hearing aids/gromits, but it may be that she needs them and that’s ok. Her speech is coming along very well.

They will also need to continue to check her thyroid, but at least for now we know she is ok.

We’ve got Daddy’s birthday coming up and then Audrey’s, so we are in for some busy weekends of fun. I’ll start prepping the Audrey turns 2 post now…

   
 

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??):

  

NO!

~ Vickywoo ~ 1 Comment

Audrey is using a new word, just in time for turning 2… She can say “no”!

I’m thinking this has come on as I’m having to say no to her more and more; since she can get in trouble now she’s mobile!

I still remember the health visitor coming when Audrey was around 1 and she asked me if Audrey understood the word no. I was a bit baffled, because I really didn’t need to tell Audrey no, I couldn’t really think of anytime I really needed to say no.

We are now in full swing with no. Audrey says “noooo”. She loves utilising a new word or sign and this one is really getting used!

I am saying no and naughty, as well as signing, when ever she does something she shouldn’t. At the moment that is;

Emptying photographs out of a box in the living room (we have to move this).

Shaking my make up bag frantically until everything flies out.

Pulling my hair.

Pulling baby wipes out of the packet and sucking on them.

Eating tissues.

Audrey thinks the little finger waggle (for naughty), is funny and she basically just copies me. I don’t think “no” is having much of an impact.

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 🙂