Social media

Audrey turns nine!

~ Vickywoo ~ Leave a comment

When the birthday comes around, my musings about the past, present and future come too. So here we are. Nine years of Audrey.

My summer baby

I guess I would normally be talking about how far we’ve come since the surprise diagnosis postnatally. Sharing positives, expressing how much we love and appreciate her, but it’s also worth talking about the not-so-super-fantastic things about having a child with needs like Audrey’s.

You see, in the early Instagram and blogging years, I read a few things other T21 mums said about pushing the whole “cute” angle with Down syndrome which can be damaging, and belittle the experiences of those facing the reality of a more grown up child with DS. “It’s no so cute if they’re 18 and still in nappies” etc.

Not everyone’s reality is a “capable” child. But at the time I just felt that, well, my child is cute and loveable and easy going – I can only write and represent my own reality, right?

Whilst that remains true (I can only write about my experiences), I see more and more as Audrey grows, with the challenges we face/will be facing, why those families might feel the “cute” loveable baby that’s “just like other babies” angle is a bit icky.

Because Audrey is fabulous. She’s awesome. A lot of fun, a kind and sweet little girl. But she’s also not. She’s whiny, difficult, stubborn, she can be mean, unkind, naughty and hard work. Well, all kids are complex and can be kind but also mean… Audrey’s ability to be both wonderful and a pain in the butt is clearly something she has in common with neurotypical kids.

But the real “difference” – the real area where I feel like the mother of a child who is disabled/neurodivergent/has additional needs, are those things that separate her without question from her typical peers.

Running. Audrey likes to run down the street ahead of us. She’s pretty good at stopping at the kerb (but that’s not 100% guaranteed), but it’s still very stressful. In crowded areas, she could get lost or knocked over, roads with driveways or entries to parking areas etc are unsafe and it’s especially uncomfortable if she is able to turn a corner miles ahead of me. She loves to be free and she enjoys doing this. If Rex did the same, but I asked him not to, he would stop. Audrey on the other hand, often takes great pleasure in defying me. I can walk down the street with her younger brother and he will hold my hand, listen to me and walk sensibly. A walk down the street with Audrey can be like that (rarely) but more often than not, it’s stressful,

Complaining. This girl can whine. She can use this skill to get what she wants, but if we do stand firm, she’ll just keep doing it even if it is ruining everyone’s experience. She’ll whine if we are watching a TV show she doesn’t want to watch. She’ll whine if the walk we are taking is too long. She’ll whine if she wants to go home from somewhere we’ve just arrived at. She’s rarely shy at saying what she’s thinking, especially if that thought is “I don’t want to do this”.

Stopping. Preferable to the running? I’m unsure. The running fills me with fear, but the stopping brings out a very angry grown up mum side to me. I have very little patience with her when she just sits and refuses to move. It drives me mad. As she gets bigger I wonder how I will move her. Obviously I hope she’ll grow out of it soon.

A recent stop and sit.

Developmental milestones. This is a big one. Where other parents of nine year olds are eyeing up how close they are to an independent kid… that feels a very long way off for us, because it is. We are not even at the stage where we can trust her out of sight in the park (which is fine for her six year old brother), so getting to a stage where she’s maybe walking to a friend’s house around the corner or making us tea – that’s not even close. I know I am going to struggle when parents of typical kids start to discuss how much easier things are, and what it’s like to leave behind those stressful years of doing everything for your child… when I shall remain in it. Still reading bedtime stories, still wiping her bum…

Physical barriers. Audrey finds climbing, uneven ground, stairs and all sorts of fairly basic physical things tricky. She’s always going to have to work that but harder at things like this and it’s a shame because she loves sport, but it’s not always accessible as she can’t keep up with others and is a bit fragile (a good example would be that she loves kicking a ball around, but the reality is, playing actual football she will either never get a look in (too slow) or will get hit/kicked/knocked and be upset and want to stop). She can’t take part in the same clubs an activities that typical kids can without additional support.

Repetition. This kid can repeat and repeat. A good example would be: on Mondays, she has an after school club which means she needs two snacks (one for morning, one for after school). If someone so much as mentions “Monday” Audrey will say what club she does and that she needs two snacks. She’ll mention this on Sunday night, in prep for Monday. She’ll mention it on Monday morning, so I don’t forget. She’ll probably mention it when I collect her. And she’ll no doubt say at some point in the week when we discuss what we are doing Thursday, and she’ll feel the need to say that on Mondays she has two snacks. She is that repetitive. Yes some of it winds me up. But what I always think is – if I can only just about handle it, when I love her to bits, do other people just find her crazily annoying?!?

Societal barriers. There is no escaping that Audrey’s options are not the same as her brother’s. If she wants to do an after school club, I don’t just sign her up and shove her in. And the obstacles will increase as she gets older (for example, when Rex is a teenager, there will be no need for “childcare”, but can the same be said of Audrey in her teenage years?). And once she reaches adulthood, we have a new level to navigate (education, work, living arrangements, independence, life skills). I am not expecting an easy ride.

So there you have it, a little “happy birthday Audrey” with a big helping of real life. Audrey is a complex being! Not just the cute and hilarious kid that makes me proud. She is all of the things. She will need more help than her typical peers, but we are up for it. And nine years on from holding that scrawny little thing that looked like an orang-utan, wondering what I did to deserve a baby with Down’s syndrome, at least now, despite everything, I feel like it had to be something good.

Behind the squares

~ Vickywoo ~ 4 Comments

If you are reading this you probably know I share our life on Instagram and I also blog here. I am always open and honest, but there are many times that when I am enjoying “likes” and comments on an Instagram post about my beautiful children I am also watching them hit each other. Life is full of ups and downs, Instagram has it’s name for a reason; it’s tiny instances shared and you don’t always show the whole story in an instant.

I like to think that I share more reality than those monochrome “perfect” accounts filled with succulents and expensive candles.

However, right now, behind those squares of my smiling children, coffee shop visits and shiny new trainers: there is cancer. Again.

I myself cannot believe how often I have been “touched” (punched in the gut more like) by cancer. My father died of cancer in 2010. My father-in-law-to-be died from cancer in 2011. My sister died from cancer in 2012. My mother died from cancer in 2017. And now… my brother battles cancer in 2018.

Me and my big bro.

It always made me a bit uncomfortable, sharing too much of this sort of thing on social media, but this time I feel so utterly thrown by it, I want to acknowledge it. I want to make sure people are always aware what’s behind the squares.

Just before Christmas, my brother found out he had ‘operable’ cancer. So it was upsetting, but apparently easily sorted. I took him for the operation on 27th December. After that, you’d have hoped it was all onwards and upwards, but he had another niggling pain. So, (after the obligatory painkillers from the GP), there were more scans, mores tests and yes, the cancer had spread.

Today he is in hospital having his first round of chemo. Week on week it has been news that has uplifted us and punched us in that gut again. They can’t quite decide how bad this cancer is. I have continued my weeks on autopilot. Much like when my mum was diagnosed with cancer and when she died, I had to “go on” with an invisible dark cloud over my head.

And so I sit and sing “Wheels on the Bus”, I make small talk with other mums over tea and biscuits “How are you?”, “Fine, fine and you?” I placate squabbling children, make dental appointments, grill fish fingers and function as a normal human being whilst in the back of my mind I am thinking about my brother. Constantly. About how he is young (43), that he’s one of the best people I know and that he doesn’t deserve this. How the kids adore him, how he adores them and how I just can’t take anymore of this darkness. Pain, suffering, death, I’ve had enough.

Sometimes when the kids are resisting their coats or fighting over a plastic egg, I want to scream at them; “Uncle Graeme has cancer! That’s more important than this crap!” but of course I don’t.

It’s pretty crazy to think about all the people “functioning” right now. I mean, I was in TK Maxx at 6pm on Wednesday night buying pants, socks and a jumper for my brother (as he was unexpectedly kept in hospital after an appointment about his scans). As I queued up and subsequently paid, with all the standard niceties “Have a nice evening”, “You too”; I wanted to scream “My brother might be dying! I need to get these clothes to him in hospital!”. And as I walked in the rain from my car to his ward, crying because I just don’t want this to be happening, I actually wanted someone to ask me: “Why are you crying? Are you ok?”, which is odd considering my “Fine” stock response to friends.

I suddenly became very aware that each and every person you pass on the street might well be dealing with something. The harmless old “Cheer up love, it might never happen” feels like such an unbelievable over step of the mark, because stuff happens . We are all dealing with dark stuff, all of the time. Break ups, miscarriages, redundancies, illnesses, deaths, depression, you name it; someone is putting a brave face on over something.

I can only remain hopeful that all will turn out fine (how else can I go on?), but I guess I want to end on two cheesy words that are said a lot right now, but sum up how I think we can make the world a better place and as a reminder that you never know what someone is going through behind the squares/their smile/their ability to say “I’m fine” (when that is, in fact, bullocks);

BE KIND.

x

Mummy blogging

~ Vickywoo ~ Leave a comment

Once upon a time our mothers mothered. They had no smart phones, no all day kids TV, no internet… they would make plans with other mums by calling on a landline or  (can you believe it?) going around to their house and knocking on the door! 

Now take a moment to think about what “we” have. Not just the technology, the means to entertain our kids, organise ourselves and find our (sorry, cringe) “tribe”; but the information. Wow. We have come a really long way since the stiff upper lip nonsense. Now we share. And share. And share. 

I’m starting to feel somewhat overwhelmed by the amount of content there is for mothers. It’s at a level where I can’t possibly keep up with all the Instagram pics, blog posts, events and debates – I would need to not have kids to have the time to read and interact with others about what it’s like to have kids.

I’m not knocking it. New mothers are being “created” every day. So the conversations need to stay public, because from c-section to child-unexpectedly-has-special-needs to post-natal-depression to refluxy-baby-puking-every-where to I-don’t-know-who-I-am-anymore; there is always something that can be helped by sharing. 

In fact, last month two things happened on the sharing front;

1. A mother I know on Facebook posted a very saccharine sweet status about how her 6 month old was the best thing in the world. Apparently being woken at 3am was fine because this baby is just so wonderful. Life has changed but oh so much for the better etc. etc.

2. The Daily Mail attacked some famous Mummy bloggers for being “scummy mummies” asking why it was suddenly ok to brag about being a shit mum? 

The former annoyed me because I felt this mum was letting the side down with her rose-tinted-spectacle view. The latter annoyed me because clearly these sharing mothers (instagrammers/bloggers) aren’t rubbish mothers; rubbish mothers don’t brag about it online. Rubbish mothers are too busy being rubbish. In fact, as they swear and smoke a fag over their little ones whilst handing them a coca-cola, they don’t consider confessing they’ve behaved in this appalling way because they probably don’t think it’s appalling. 

Of course I’m backing the “scummy mummies” all the way. One of the bad parenting examples was giving kids fish fingers. Which was basically my main diet as a five year old… And now my kids have fish fingers at least once a week and I don’t see that as shameful. It’s something they happily eat and if you’ve ever experienced a fussy toddler, you’ll know sometimes you just want them to eat. No bargaining, no choo choo noises, no tears, just happy, scoffing children at tea time. Many mums stood up in #solidaritea and posted pictures of their fish finger tea time, and Bird’s Eye used it to their advantage in an online campaign – good on ’em!

Back to the happy mum; well, good for her. How funny that my immediate thought was “you’re lying”! She is entitled to be enjoying those first 6 months and to feel good enough about it to brag online, but I’m so used to reading the opposite mantras of “it’s so hard”, “you got this mama”, “it’s tough but worth it” – it’s honestly a bit shocking to just read a positive post about having a baby – just saying their baby is a joy, no one is doing that – how odd!

But of course here I am over-sharing with the rest of them. My children are a joy. There are moments in our days together where I think I might burst they are so lovely. However, these are moments mixed in with all the other stuff that comes with parenting; the child that will not lie still whilst you deal with poo-mageddon, a melt down because you’ve put a book back in the wrong place and all the other bizarre moments on the rollercoaster that is looking after small children. It’s tough. It’s a also a joy, but yeesh, it’s mostly tough. And that’s where I can’t complain about the insane amount of parenting blogs. The over-share is there to help us through the tough times, remind us that everyone is going through similar stuff. 

So, keep on blogging you mothers (but don’t expect me to have time to read it all)!

Great or managed expectations?

~ Vickywoo ~ 2 Comments

I have a question for mothers of children with Down’s Syndrome; is knowledge power? Do you prepare for the worst or simply expect the best?

I follow a lot of families with the extra chromosome in the mix. I see the highs and lows of parenting (full stop). I also see the highs and lows of parenting a child with special needs.

Sometimes I see stuff that scares me. I start analysing Audrey, or worse; start Googling.

Something that has played on my mind recently is “sensory overload”… Children with DS who are unable to cope in noisy/busy environments. Concerts. Parades. Carnivals. Festivals. Stuff that’s fun. 

We’ve had a taste of Audrey reacting negatively to situations like this when she got upset at the (very noisy) Children’s Parade and sometimes she complains when things are “too loud”. The thing is, lots of kids might get upset by a loud parade, but because she has Down’s Syndrome, it’s the condition that gets the blame. 

We went to a pirate birthday party and Audrey was especially clingy and wouldn’t eat her food (even though chocolate, yoghurt and fruit were on offer – her faves!). She only really relaxed when all the kids went outside to hit a piñata and we stayed inside and “Let it Go” started playing. 

And then there’s the family-friendly gig we went to (with ear defenders) and she just stared with her mouth open the whole time. She at least clapped after every song, but for Audrey, our little groover, it was odd. She usually goes mad for live music, but instead she looked more “special needs” than I had ever seen her.

And I feel it’s a double edged sword – everyone either assuming she’s gentle/placid/agreeable (she’s not always like that by the way) because of the Down’s Syndrome….

Or when she is moaning or whining like a typical 3 year old would, I feel worried about people thinking it’s a kid with special needs losing the plot. That they are looking at me and thinking “Poor woman, I bet that kid is hard work”. If she were a typical child, it would just be that Audrey is having a standard tantrum.

Recently it was bonfire night and we went to a friend’s house for fireworks. We did forget the ear defenders, but to be honest, I don’t think they would have made much difference- fireworks set off in a small garden are and absolute assault on the senses! Audrey didn’t like them at all and Rex wasn’t keen either, in fact Audrey’s 2 year old friend came inside to escape too. But one of our friends was very much singling out Audrey as having a problem with them, you could hear from her tone she was suggesting that it’s an issue for Audrey because she has Down’s Syndrome. And that grates to be honest. It’s frustrating that we can’t escape her syndrome sometimes.

I guess I used to assume everything was just Audrey being Audrey, but as time goes on, I’m wondering; should I prepare for stuff that kids with Down’s Syndrome typically encounter? Maybe I should stop fighting it and accept that DS makes her more prone to being a certain way?

I read a post from a local lady, who was upset because she cannot leave the house alone with her 12 year old son (who has DS); it’s too hard – he runs off. It’s dangerous because he runs across busy roads and she can’t keep up. Other mums commented to say that were in the same boat, one even described her son as like “Iron Man” – she can no longer cope with his strength. I just tortured myself by reading the whole thread – kids that throw things, sit down and refuse to move, don’t sleep until the early hours…

I look at Audrey, our gentle, usually careful little girl and cannot imagine her becoming an out of control runner, toy thrower or rubbish sleeper… But I worry about it regardless. Mostly I see a bright future of cuddles and fun with Audrey, but the worry creeps in sometimes. It’s natural and it’s enhanced when a condition gives you clues as to how human might be. 

And as she grows, she learns and she starts pushing boundaries, so I’m getting used to Audrey causing more trouble than she used to and not being that placid agreeable creature that some people assume she is. So I guess I’ll just try to go with the flow and see how she turns out… Much like with her brother, who has no “syndrome” (that we know of), but is proving to be an active and tiring baby to look after! So do I project and assume he’ll always be hard work?!! No! Let’s just see what happens…!

A World Without Down’s Syndrome

~ Vickywoo ~ 2 Comments

Daddy holding his tiny baby daughter
 

When Audrey was born, my brother Googled to find out if any celebrities had a child with Down’s Syndrome… and he found Sally Phillips. It was very thoughtful of him to try and make it “acceptable” for me – appealing to my (shameful) interest in celebrities. At the time I read an interview with her talking about her son Olly and it was very positive. But I couldn’t find more than that one interview and I guess I wondered why she didn’t do more. But now I see that it’s a really big deal to “put yourself out there”. 
I have wanted to write about Sally’s documentary (“A World Without Down’s Syndrome”) for weeks, but I’ve found it incredibly hard. The lead up was a draining and consuming time. I felt anxious and stressed about being involved, about making a difference. So much positive and negative feedback, so much going on… And yet I know that this was just for those of us with an eye on the subject. For many, the film may have passed by unnoticed. 

But not me. I was watching it approach slowly, following a behind-the-scenes Facebook group that was prepping for press and publicity around it. I had planned to catch it at my convenience on iplayer, but after watching the beginning, I had to stay up and watch it. I was crying within seconds of it starting!

I was so desperate to write about it, yet my thoughts sort of ran dry. So many reviews. So many reactions. It’s been tiring processing it all. It matters to me – that people would watch it and love it, watch it and learn. But I appreciate why many thought Sally wasn’t the right person to make it – she comes from a biased perspective. However it needed to be made and it needed that positive skew. That was the point – communicating the positive side to having a child with Down’s Syndrome – balance against the negative information and medical condition list you are given at diagnosis. And also questioning a society where we actively look to rid the world of people who are different. Someone has decided that this is a wholly negative condition and therefore it’s worth screening for accurately.

If you watched the film and took it the wrong way (maybe thinking it was anti- pro chioice, judgy or preachy? Maybe thinking it sugar-coated life with a child with special needs?) please be assured that wasn’t the aim. It was a truth, it was Sally’s truth.

And just as Sally shared her truth, I share mine. Audrey hasn’t needed lots of medication or operations. She was on oxygen for the first 6 months of her life because she needed a little help breathing in deep sleep. She needs glasses because she is long sighted and (like me at her age), she has a lazy eye (aka squint). She has low muscle tone which is indeed a bugger and is making it harder for her to walk, but it also means she can practice yoga like a pro (like her Great-Grandmother, Emily, aka the Filleted Lady!). She lacks strength in some areas, but is amazing in others. She is basically a human being, perfect and flawed…yep, she is one of us.

Trying to create a world of perfect humans scares me. It also scares me that the very same brother who found Sally Phillips Googling famous people linked to DS, thinks that it’s a good thing to rid the world of the condition. Yes he said that. How can he of all people not get it? I guess it’s a common view that the world would be a better place without disability. Again, I feel I have too much to say on that subject so I’m struggling to blog about it. But clearly, a world of varied strengths and weaknesses, of light and dark; that’s a better world than one of “perfection”. I can’t even say for sure what perfection is. I had a lazy eye as a child, my sister was diagnosed with MS at the age of 40 – are we so flawed we shouldn’t have been granted life? Eek, what a debate this could be…

My hope is that people simply think about people with Down’s Syndrome as that – people. Understand that they contribute to the world we live in and bring happiness to their families. I’m not a religious pro-lifer, but I feel very blessed to have Audrey. Our lives are richer and happier for having her in it and she’s about as close to perfection as I could ever imagine.

#worldWITHdowns

 

Me vs. Mummy

~ Vickywoo ~ Leave a comment


This post is not about fighting my mother. Or indeed fighting my mother persona. It’s about being me versus being a mother. Yes I know you can do both. Not so sure I can though.

Women are all different of course and some are better at the “balance”(?) than others. I am back in the thick of being Mummy and not very me. Upon his arrival, Rex reset the dial to “maximum mummy” and I didn’t see it coming which was stupid considering I’d already been there, done that.

I feel like I’m wading through treacle even though everyone bangs on about “how quickly this time goes”, but I want to walk down the street alone, carrying a small handbag, maybe containing a book I’m half way through reading and meet a friend to sit and talk about crap for a couple of hours whilst drinking wine and nibbling cheese.

Instead I leave the house with a baby strapped to me, rucksack of many essentials on my back, pushing another child in a buggy. Often handing out breadsticks, constantly clock checking for nap times, feeding times, nappy changes. Worrying if little people are hot/cold/thirsty/have enough sun cream on. I can’t eat cheese because we think Rex is dairy intolerant (and I’m breastfeeding), I can’t drink copious amounts of wine as I’m told that’s not his thing either.

My hair is brown (with increasing grey) because my usual dabbling with fun colours is too much up keep. My clothes are functional, drool sodden and dull. I’m in need of a manicure, pedicure, wax, eye brow tidy up, massage… a full MOT basically. Yep, I feel a bit like an old car that needs a tune up.

Because I have been here before I know it will all come good. I can have silly hair again. I can wear clothes that don’t require access to my boobs, I can drink and eat what I fancy and I will one day spend time alone again. But it is so hard to imagine getting out when I am here; in the treacle, stuck to one child with another trailing behind.

And of course I see those mothers who don’t have to choose. They have their make up on, they are expressing or formula feeding and they are out and about enjoying themselves sans babies. Kids don’t hold them back, don’t change them. But I personally cannot get my head around it… I feel so very responsible for these mini-humans, they are my responsibility and Daddy is a helper. Yes I know this is stupid, but especially whilst I am on maternity leave, the baby is my “job” and it seems too early in the contract for taking a break. 

Plus babies seem to make me a routine-obsessed-control-freak. Yes, I’m that fun!

When the fog lifts and I can be “me” again, I’ll try to enjoy it as best I can. I’ll do a little dance if I get a full night’s (unbroken) sleep, actually I’ll do a big dance. The entire Flashdance routine.

In the meantime I’ll dabble in me… Put on something nice (only for Rex to smoosh banana on it and puke on me). Blow dry my hair only for the wind and rain on a long buggy walk to completely enhililate it. But these are glimmers of hope as the fog lifts… I can almost see the Cos shopping spree and cocktail night  somewhere on the horizon…

Photos to follow are a reminder of me before “Mummy” me…

San Fran 2009 and NYC 2012; freedom, hair, jewellery and fun:

Feel the love

~ Vickywoo ~ Leave a comment

  

Last night Audrey wouldn’t settle on her own, which is reasonably rare and after a cuddle and sing song with Daddy, the crying started again. So it was my turn to have a go. 

She cuddled me with one arm tucked around me, with her other hand on my hand, interweaving fingers. I told her we were holding hands and she whisper-giggled with me at the fun we were having in this dimly lit room. I rocked in the chair silently and we gazed at each other whilst playing with our hands. A moment of perfection. I could feel our love. Her face – just the most beautiful little girl I’ve ever seen, her gaze fully locked on my mine, looking very much like a child who is not sleepy and will not be rocked to sleep!

Yes, it crosses your mind: er, excuse me miss, we had just started a new series on Netflix, I was about to put my feet up with a glass of milk (a pregnancy heartburn must)… But at that moment I just felt such bliss at being there for her. Being her mother. 

I’m sure I bang on about this in every post, but it’s a heightened feeling when you’ve had such negative thoughts about your child and your imagined relationship in those early days. It scares me to think that a “syndrome” label made me question the love and connection I would have for my daughter, but it did.

In fact, I’ve just recently been filmed sharing thoughts and feelings after diagnosis for a short film that will hopefully help new parents. And on an email calling for more contributors, a mother with a grown up son with Down Syndrome questioned her involvement – she wouldn’t want him to see her talking negatively about his life. Which I completely understand. However, I really hope to explain to Audrey one day that the reason I’ve shared so much online (including some pretty upsetting thoughts and feelings) is that I want society to move forward and I want to take as much of the negativity away from other parents as I can. And I want her to know that it’s because of her, because of her fabulousness, that I feel so strongly about banging this drum and changing perceptions.

Of course, in an ideal world I want someone to receive the diagnosis and think; ‘Who cares?’, but I appreciate it won’t be that simple. But how about, after the initial shock/upset/confusion, you quite quickly move forward by thinking about a family you saw online…? A mother who wrote about love, beauty and fun… She showed that your life with your little one might just be how you had expected things to be pre-diagnosis; singing songs together, reading books and cuddling before bedtime, sharing in a peekaboo joke… The path is a smaller deviation from the original than you might think and the overriding fact that should help take the negativity away is: you are their parent and you will love one another no matter what life throws at you. 

I’m thinking that’s parenthood as standard though, isn’t it?

  

Stereotypes; there must be more to life?

~ Vickywoo ~ Leave a comment

I was recently lifted by the sight of something so simple, natural and not out of the ordinary. Yet it was just what I wanted to see and it challenged that stereotype of a person with Down’s Syndrome that I found so desperately upsetting when Audrey was born.

I saw a young woman with Down’s Syndrome shopping with her dad in a supermarket. She had on colourful clothes and was carrying a blue Michael Kors handbag. I was watching them from afar (Audrey was asleep in the buggy) and as we went through the checkout and I noticed that Vogue was on offer (only £2!), I glanced down the rows of checkouts to see if she was still around… Just in time to see her leaving with a Vogue tucked under one arm.

This ridiculous thing made me feel so happy. I tried to think why… And I decided it’s about inclusion, representation and knowledge. Maybe it wouldn’t seem so amazing to see a fashionista with Down Syndrome if one popped up now and again on TV or in a magazine.

This is what I love about social media when it comes to the DS community. I can explore the diverse world of; people who are like me and people who are different. These two things make me happy in so many ways.

Connecting with people who are like you;

Well it makes you feel… connected. You can have banter about those things that you share in common, like shiny new Nike Airs or a good lemon drizzle cake or getting a fringe cut in.

Seeing people who are different;

What does the mother of a child with special needs look like? Is she mumsy? Old? Plain? Sensible? And what hobbies does she have? Knitting? Volunteering? Does she like music? Probably Cliff Richard? Or Daniel O’Donnell?  Well those preconceptions can be shattered.

Call me crazy, but pre-Audrey I imagined families with children with special needs. I thought: geeky. Respectable. Good. Boring. Worthy. A grey, depressing world. So I love to see families with children with special needs who do not fulfill that grey expectation… tattooed, blue haired, fat, thin, trendy, twee, perfect, messy, tacky, stylish… it’s just fun seeing that there are so many different families out there tied together by having that someone who has an extra chromosome. And we are all “representing” (this needs an American accent, doesn’t quite work in a British voice!). We are showing the spectrum rather than letting people imagine the grey.

Something that helps bind us to these families are the facial characteristics that are common in people with Down’s Syndrome. Imagine seeing another family whose child looks remarkably like yours… Freaky? Yes it can be a bit! But of course we see the beauty in those faces and we feel connected. It’s pretty amazing actually. An extended family.

A couple of months ago, I had my haircut at a new hairdresser. I have had the same home hairdresser for years and she was away and I needed sorting asap. So I had to go through the motions of small talk with a stranger. He was young (28), bearded and tattooed, I worried we’d have nothing to talk about, but he had a 5 week old baby girl and 2 stepsons so that made it easy; we can talk about kids, hurrah! I mentioned at that point we hadn’t really told everyone about our pregnancy as we were waiting for the 20 week scan, feeling a bit nervous after a miscarriage. He understood, he had some friends… They had the “Down’s test…” and I’m thinking “Oh no, don’t go there…” It was an out of body experience as I felt a bit sick and waited for him to finish this sad story of his friends and their scan… The baby had an extremely rare condition, it wouldn’t have survived, so they had a termination. A sad story and at this point I felt the need to say “I should probably mention that my daughter has Down’s Syndrome..”. He was a little embarrassed and rambled a bit about this specific condition not being like Down’s Syndrome and it was a bit uncomfortable for both of us. I felt I had a real opportunity to educate but I didn’t want to sound like I was preaching and I did find the situation difficult. He asked me “Is it tiring?” and I have to admit I wasn’t entirely sure what he was referring to at first! “Having a child with Down’s Syndrome?”, “Oh no! In fact, she’s probably not as tiring as her peers as she can’t run riot and she’s just very gentle and content most of the time”. It was weird discussing Audrey in this way; as a child with DS, rather than just a child – and someone wondering “Your kid has Down’s Syndrome, wow, what’s that like??”.

We bang the drum for inclusion and I guess some people wonder why. My brother actually thought it was funny we were so obsessed with seeing people with Down’s Syndrome on TV – I think to a certain extent he was being cynical in that advertisers and channels can use disability inclusion to ‘score brownie points’. And I get that. Pre-Audrey I may have agreed. “Oh they’ve shoe-horned a character in a wheelchair into this story line, yawn”. But now I view those things oh so differently. I am excited by the representation of minorities in the media now. No, I don’t want to see a Down’s Syndrome character forcefully added to every TV advert, but to see a face from our community every now and again is a nice feeling. Especially when it’s just representing life, not trying to represent disability.

And that’s what I’m trying to do with blogging about Audrey, just represent our life. And maybe (hopefully) we’ll reach someone who needed to see our life in order to change their perception of Down Syndrome for the better.

   
   

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.