Motherhood

Down’s Syndrome Awareness Month 2015

~ Vickywoo ~ 3 Comments

October is Down’s Syndrome Awareness Month. 

Sometimes I feel like I’m living DS awareness continually and I don’t need to highlight the month (I imagine friends and family thinking “Yawn. Yes, we know you have a kid with Down’s Syndrome, stop banging on about it!”), but then I realise it’s an opportunity not to be missed.

I’m always trying to raise awareness that Audrey is great and we are happy – that having a child with DS might not be what people expect. But I also realise that our reality with Audrey isn’t everyone’s reality of living with a child with DS. I’m still keen to spread awareness that she’s everything we hoped for and more, but for this month I’d like to teach people a few important things too. So I’m going to try to cover some topics that people commonly don’t know, questions we get asked or uncomfortable language people use without realising.

1). Language does matter.

When Audrey was first born, I thought people were being petty over “a baby with Down’s Syndrome” rather than a “Down’s Syndrome baby”. But as things have progressed, it does grate when that language comes up. You start to feel strongly that your child is just a human being who happens to have DS. They are not “Down’s Syndrome”, they have it. My mum in particular used to say “just because Audrey is Down’s…” And I had to correct her, because she isn’t “Down’s”, she’s Audrey! This is a tricky one, because I wouldn’t say “a person who is deaf”, I’d probably say “deaf person”, although I guess the preferred term now is “hearing impaired”?  So I understand it’s hard to get this language right and no one wants to feel all politically-correct-crazy. But do think before you speak if possible…

You wouldn’t expect it, but often other people with family members with DS are the worst. Just this week I’ve had someone say “I have one the same” (pointing at Audrey) and “My sister had a Down’s kid… They’re so loving, aren’t they?”. Yeesh. 

Oh and when you are referring to other children and discussing my child with DS, those other children are “typical” children, not “normal” children. Obviously it’s uncomfortable to imply Audrey is abnormal!

2). Different.

Children with Down’s Syndrome have lots in common, due to the condition (and I’m going to cover some of those things in this post), but they are all different. Just like typical people. Crazy, eh? People who have Down’s Syndrome are people. So they can be naughty, they can be into heavy metal or be gay – yep, just like typical people they all have different thoughts, feelings and interests. So they don’t all love cuddles (although luckily Audrey does, phew). 

Again, I might get asked “When do they expect her to walk?”, “Has anyone been able to give you an idea of how mentally able she’ll be?”. I appreciate the interest and I know people mean well, but unfortunately all we know in general is that she will be on a slower learning curve than typical kids, but even that could be smashed… Audrey was the first back to front roller in our group for example. But she’s 26 months old and still not walking, so how about we just see how she gets on and not over analyse, ok?

3). Low muscle tone. 

Now, this is something I had no idea about pre-Audrey. Babies with DS usually have low muscle tone, which means they are a bit “floppy”. This results in a delay in physical milestones such as sitting up unaided, crawling, walking and the issue also affects the muscles in the mouth (the tongue and palate etc), which also makes it trickier for speech development. This is a useful one for people to understand as it would be nice if it wasn’t a shock that Audrey still isn’t walking. I also think it’s useful to know it’s not that Audrey hasn’t figure out how to walk, it’s that she physically doesn’t have the muscle tone to stand and walk. She’ll get there, it’s just going to take some work. In the meantime, the bottom shuffle is epic.

4). Learning difficulties. 

Most people associate this with Down’s Syndrome. In general they will be a bit behind typical children, but beyond that we can’t predict how Audrey will progress with any more accuracy than you can decide at 2 years old if little Tarquin is going to be a brain surgeon. 

One good thing about a recognisable condition such as DS; there’s so much research and history, that professionals know what works in terms of teaching. Kids with Down’s Syndrome typically enjoy reading and are visual learners. I’m told by Audrey’s special educational needs practicitioner that many children with DS start school ahead of their typical peers in terms of literacy, as they will have had so much focus and attention on that area and generally respond well to books.

I feel like I’ve gone from worrying about Audrey’s academic future, to feeling excited by it!

5). Being Mongolian.

The Mongolian thing just amuses me. Not long after Audrey was born, I looked up the term “mong” because I remembered it as a derogatory term used in playgrounds when I was younger. I knew this was a term used for people with Down’s Syndrome, but I didn’t know why. When I found out why, I just thought it was ridiculous. John Langdon Down (the man who first classified the syndrome, finding the shared characteristics), thought that people with DS looked like the Mongolian race due to a similar physical appearance and labelled them “Mongoloids”. It just feels a bit ridiculous now, “Ooh you look a bit Mongolian…”. Clearly, the term moved on from a classification to become a term of derision and abuse and I would be appalled if anyone called Audrey a “mong”, so please don’t take any of this the wrong way.

Ted and I have often joked that our genes plus a dash of Mongolian = one beautiful baby. The Mongolians should be flattered.

So what are these exotic features… Well, it’s almond shaped eyes, a button nose (sometimes quite flat), the crease under the eyes and small ears. Possibly also the fact that people with DS are generally quite short, with shorter limbs? 

Poor Audrey, Daddy’s not exactly a giant, but I’ve got serious shorties on my side, so she was never going to compete with Naomi Campbell on height. My mother is under 5 feet tall!

Anyway, I’m going to leave it there for this post. I hope some of it it was useful/interesting… But if you take anything away from Down Syndrome Awareness Month, let it be this; people with DS are similar in some ways, just like the human race is, but they are also individuals. We never know what to attribute Audrey’s qualities to. Is it because she’s;

A girl?

A child with Down’s Syndrome?

Our child?

Her own person?

A 2 year old?

A Brightonian?

Influenced by nursery?

Nature nurture blah blah blah… She’s just Audrey.

   
   

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

~ Vickywoo ~ Leave a comment

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.

   
 

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 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.

  

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 🙂

   
 

Passing the time

~ Vickywoo ~ 1 Comment

Time is a funny thing. If you have 10 minutes to get ready and leave the house it feels like a ridiculous rush, but 10 minutes waiting for a bus feels like forever.

I’ve been pondering the passing of time a little lately because of Audrey. It’s well known amongst those of us raising a child with Down Syndrome, that things take longer. Whether it’s growing (Audrey wears age 12-18 months, but she is almost 2) or learning (she’s still not mobile and only has a few words).

It’s funny how often with a child (of any kind) that small pockets of time feel like forever. Phases of teething or fussiness or not sleeping… Often these things last a few days or a week, but every time I’m in the thick of a new phase, I think it’s going to last forever! I literally have to keep reminding myself (by repeating a sort of mantra; “it’s only a phase” or “this too shall pass”!). Do I get my flair for the dramatic from my mother? Ooh she loves a bit of drama (even if she says she doesn’t). Who knows? But when we hit a bump in the road, I hit panic mode. Worrying she’ll never sleep through the night again or never eat a breadstick again or never self-settle for a nap etc. In reality, you might get 7 mornings of 5am starts, but then you might get another 7 of 6.30am-ers, who knows?

On the whole, we have a pretty good girl on our hands. One that does self-settle and does sleep through; 99% of the time. She’s very loving, easy-going and eats well. And although these little phases feel long, but realistically pass by quickly, Audrey just isn’t growing up very fast. So we also have the flip side of time passing very slooooowly.

This is magnified by her peers. The gap is wider than ever now that toddlers younger than Audrey have more words and can walk confidently. It’s all very well when we are at home with Audrey in our ‘bubble’; in our bubble she’s a genius. We cheer like crazies every time she gets a motor skill spot on, every time she attempts to stand (she’s pretty far from standing, but she is just starting to push up onto her feet if we hold her under her arms), we look at each other filled with pride when she says and signs ‘Mummy’ and ‘Daddy’. Audrey gives us many reasons to feel proud.

We have just been to stay with friends who have a daughter 3 months younger than Audrey and this made her slow progression all the more obvious. We stepped out of the bubble. I mean, I had Audrey out in my arms when this child was still growing in her mummy’s tummy and yet, here she is saying all our names, running to collect whatever colour ball she is told to… Even my husband admitted a “pang” and hey, it’s only natural to get those feelings, how can we not?

What I have realised is how my sadness has shifted since Audrey’s birth. It’s no longer “Why us? This is so unfair”, now it’s all about her. We were not unlucky to have a child with Down Syndrome, but Audrey is unlucky to have it affect her life in a negative way. Because it’s not all kisses and cuddles (ok, 90% of our day is I guess), but it’s a life faced with “disability”. Which is still a bit of a dirty word for us, but it’s true that she doesn’t have the same level of ability as her peers or even those younger than her and that sucks.

What I took away from our visit with our friends, was that Audrey and Ivy should have been running around together, playing games, holding hands, chattering away… But instead Audrey was bum-shuffling as best she could and Ivy was from time to time upsetting her with dangerous (loving) cuddles! She kept squishing her older friend who is much smaller than her. And yes, I felt a pang of jealousy that Audrey couldn’t do all these simple things her younger friend can, but I didn’t feel bad for us, I didn’t feel upset that we had been dealt a bad hand, I just thought how it sucked for Audrey. And the only way I could feel good about it was to think; one day they will be great friends. One day they will hold hands and run around together and Audrey will teach Ivy a little something about being different and being patient and hopefully we can all laugh about the “death cuddles” and Audrey can have a go at flooring Ivy with a cuddle of her own and we’ll all have a good chuckle at how time has finally flown and how grown up our kids are!

  

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…