Down’s Syndrome

Happy Halloween 2015!

~ Vickywoo ~ 3 Comments

Once upon a time, Ted and I were fancy dress fanatics. Halloween would be the peak of our costume creations (in part due to the Brighton Zombie Walk we attended every year). But times change and babies arrive… We haven’t had many costume parties to attend or much time to devote to cutting, sticking, sewing etc.

However I have been eagerly awaiting the chance to have an annual Halloween bash where Audrey can wear a costume and we can make spooky treats for her to eat… This year Ted dressed as Sheriff Brody from Jaws, I was his wife and Audrey… Was the SHARK!

Enjoy the pics and Happy Halloween!

   
    
    
    
 

The downs 

~ Vickywoo ~ 1 Comment

Audrey doesn’t have a lot of physiotherapy sessions as the NHS service here is understaffed. This hasn’t been ideal, but I haven’t been excessively worried about it.

As we near the arrival of Audrey’s baby brother however, I do grow concerned over her lack of interest in standing/walking and I want this to progress as quickly as it comfortably can.

The truth is, we’ve been given exercises to work on at home, but I hardly do them because Audrey gets grumbly/upset. I basically let her get away with 20 seconds of standing here and there and then give up.

Some other parents of children with special needs recommended a local service (funded by a charity) that offers physio on a weekly basis, so I got in touch and we attended our first session Friday morning.

I’m not sure I can quite put into words what it was like. The funny thing is, I’m sure the ladies running it would have had absolutely no idea that when I left I had a cry on a friend’s shoulder because I found it all so hard. When I was at the session I bottled up all my feelings and was polite and thankful for their help. And that’s the thing – they were helping, this wasn’t a torture group! But oh it felt like torture.

Audrey was given some shoes to wear (the new boots we bought her just a week ago aren’t supportive enough) and she was “encouraged” to be in certain positions (kneeling, standing, walking(!), sitting and crawling). Audrey was her usual friendly, kiss-blowing fabulousness – but she spent much of the time saying “nished” (finished), “no” or simply grizzling. The bottom lip came out in full force (I just wanted to cuddle her!) and there were tears (from her, mine came later).

The ladies running the session assured me she wasn’t that upset (they’d seen worse) and they were encouraging… But it was one of the first times I felt fully exposed to a feeling that things were hard. That having a child with Down’s Syndrome involves a struggle. And I was angry that I have to put her through that in order to progress her walking… It won’t just come to her, we’ll have to work hard and it will be hard.

It was also just really horrible going to a group that wasn’t fun. Don’t get me wrong, they sang and we looked at books and drew pictures and had a snack… Most of the usual stuff… But normally I go to groups specifically for Audrey to dance and have fun (sometimes whilst learning of course), but I sit there beaming with pride whilst she does her thing and we leave happy.

This involved all the grizzling, plus questions about what she can and can’t do. It just highlighted her issues, rather than all the positives I usually focus on.

And I appreciate that there’s no use in me ignoring the tough stuff – we have to deal with it and get through it. But I guess I am haunted a little by some lovely things people said when we first had Audrey… “She’s so lucky to have you as parents, you’ll work so hard for her”, lots of people said we’d be so great at helping her progress and I felt worried about this expectation because I’m quite lazy, forgetful and also a soft touch – this combination doesn’t make for a great task master! I knew we’d work hard on the signing, speech and read to her a lot, we would play and hopefully make it educational… But I wasn’t confident I’d “push” her. So I guess this group highlighted this insecurity – or rather exposed it!

Now it’s been over 24 hours since the group, I’m feeling better about it (and remember, I am a mess of pregnancy hormones), so onwards and upwards! We’ll work hard and Audrey will enjoy standing up eventually and when she’s walking, all this tough love will have been worth it.

I don’t have any pictures from the group, but I’ve always got pictures of Audrey to share, so here she is from this morning:

  
 

Bun in oven

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I’m going to start this post by describing what it was like to find out “we” were pregnant with Audrey.

As someone who enjoys a surprise but wants the surprise RIGHT NOW, I peed on a few sticks unnecessarily before striking positive after about 6 months of trying for Audrey. I just couldn’t “wait and see”, if I had a pregnancy test in the house, I had to pee on it!

Once we had recieved the positive test we were hoping for, of course we said we’d keep it to ourselves until the scan… just tell a few friends… Actually we were super restrained in that we didn’t tell our family. We kept this secret as our scan was due just days before Christmas and we thought it would be an amazing announcement to make on Boxing Day with both mums and brothers in attendance. However outside of that big announcement, we did tell quite a few friends. Not least because of the logistics of me dodging alcohol during Christmas party season!

The fact is though, that despite my lack of morning sickness and general feeling fine, we were pregnant and that was that. And so it progressed and we had Audrey and the rest is history.

The second time we got pregnant (end of September 2014), we treated it in a similar way. We were on the same schedule, so the family announcement was set to be the same… Although this time an event prompted me to tell lots of people – as the company I worked for (for 8 years) went into administration and I lost my job. At about 4 weeks pregnant. So I was emotional and worried and kept telling people why this was such spectacularly bad timing.

At 10 weeks we lost the baby. I’m relieved we weren’t further along and even though it was still horrible, it could have been so much worse. Plus we had Audrey around to keep our spirits up.

And so at the beginning of 2015, we were back to square one, trying to make a sibling for Audrey.

I still hadn’t found a job, but we feared more miscarriages or a long period of trying, so decided to just keep on going and see what happened. Naturally I fell pregnant shortly before starting a new job. Oops.

With this pregnancy, we still told lots of people (we can’t help ourselves), but we didn’t feel anywhere near as confident. You just realise how fragile it all is and that people don’t like to talk about miscarriage, so you only really find out how common it is once you’ve had one and others start sharing stories.

So we’ve waited until 20 weeks until “coming out” as expecting baby number 2. Which means we’ve had the scan and this time we’ve found out the sex. Audrey is going to have a baby brother! We didn’t care either way, but I’m feeling excited about having a boy, as it’s new territory. We just genuinely feel blessed to have one child, let alone two. I’m scared of what lies ahead (looking after two?!!), but I’ve always wanted a big family, so haven’t ruled out a third (hmmm, let’s see how that goes).

When Audrey was born, I yearned for a “normal” child – I wanted to make another one quite soon. Well that’s not entirely true… I guess I just really wanted to know we would have a typical child or I wanted to fast forward to having one – to getting that child I was expecting to have in the first place. The great thing is, as time has gone on, I stopped yearning for that child for me, I just really wanted it for Audrey. A sibling, a playmate… a family with more to offer her. I realised that if we couldn’t have any more children for some reason, I didn’t care… We’d adopt to get that bigger family because we just want more than one child. I don’t need to produce a perfect baby to satisfy a need, I have that already, in Audrey.

  

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

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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.

   
 

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.

  

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??):