Down’s Syndrome

Audrey is 3!

~ Vickywoo ~ 1 Comment

Oops. Audrey turned 3 and I forgot to blog about it. Such is the foggy brain of a sleep-deprived mother of two.

She has had several rounds of “Happy birthday”, at home, Whoopsadaisy, nursery, over the phone from Nanny, at her picnic party in the park… So the happy birthday song has joined her repartoire and I hear it at least once a day. Another brilliant new favourite is “We Are the Champions” – we watched a Jimmy Fallon clip of lots of stars singing it and now Audrey sings the chorus a lot, much to our amusement.

Anyway, Audrey had a fabulous birthday. And here are some pictures to prove it… Oh and Rex tried some solids for the first time on her birthday, he was unsure!

With Mary and Claire, my bestfriends and bridesmaids

Audrey’s Magical Powers

~ Vickywoo ~ 3 Comments

The other night I had half a glass of wine and cried because I love my daughter so much.

It was Friday night; Ted arrived home with fish and chips. We arrange a little portion for Audrey, stick Rex in the bumbo, get the music turned up and enjoy ourselves. After stuffing our faces we all retreat to the sofa and dance. And sing. And laugh.

In amongst this pretty fabulous (but not out of the ordinary) scene, I look at Audrey and start crying (with joy). She senses the tears immediately; “Y’ok Mummy?” she says, arms outstretched for a cuddle. “Better?” she asks, patting me on the back.

You see, I just get struck now and then by these scenes of happiness. Of our “normal” family life and the light that Audrey brings to it.

As we continue with our second parenting experience, it can feel strange to be out and about with my “typical” baby. I feel like I don’t have my “special needs mummy” badge on display, that no one knows that I have an extra special family with a different experience of how things go. How nothing should be taken for granted. Rex is 4 months old and seems so sturdy, almost ready to sit up, stand… Talk. Now I see clearly how hard Audrey has had to work at things that just happen for typical kids.
But somehow because of this extra chromosome Audrey has a magical way that just makes things special.

She does some classic sympathetic crying when other kids are upset (oh her famous bottom lip!).

She says “Thank you” when children steal toys from her.

She can get a smile out of some of the grumpiest looking people. And on that note…

She doesn’t judge. She waves and says hello to tramps, teenagers, people covered in tattoos, people who look unclean, the old, the young, the fat, the thin, men or women, black or white – Audrey just likes people and that makes me proud.

It’s also fabulous to witness how she can light up a doctor’s waiting room or bring out smiles to grumpy people on the bus or in a queue. 

Her dance moves are a sight to behold.

Her cuddles melt into your body.

She just pretended to hurt both her feet so I would kiss them better.

She has started using “one more” as a way of getting me to continue playing/feed her biscuits/extend bedtime reading.

She regularly shuffles over to help Rex reach his toys.

There’s so much to say about Audrey’s wonderful nature (and her cheeky attitude), but I’ll leave it there for now. And please know that she is still trying lots of toddler stroppy tricks on me and is getting to be quite a handful these days. Still, I predict Rex’s toddler tantrums will be a bit harder to handle…

Feel the love

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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?

  

NIPT: Don’t Screen Us Out

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NIPT (non-invasive prenatal testing) is being hailed as an amazing breakthrough now available on the NHS in the UK, that will save so many babies. The theory is, women will be offered this testing and there will be no need for an amniocentesis – which carries a risk of miscarriage. No need for further testing because this non-invasive test will give you an accurate answer on whether the child you are carrying has Down’s Syndrome (or Edward’s Syndrome or Patau syndrome) and then you can be prepared for their future (aka you can abort). Ok, that’s harsh, but when you consider 9 out of 10 woman abort when finding out their child has DS through amniocentesis (generally quite far down the pregnancy time line), how many will choose to abort when having this accurate test at 12 weeks? 

This has rocked the DS community because we are basically heading towards the elimination of Down’s Syndrome altogether. Which feels like a pretty crazy concept when you actually have a child with DS. We’re part of a community that will cease to exist, but not only that, it will cease to exist because society decided that babies with Down’s Syndrome have less value than ‘typical’ babies. That their lives are so tough(?) troubled(?) unhealthy(?), that they are better off not living. How do we explain this to Audrey?

I do of course have to acknowledge that 80% of babies with Patau syndrome will die before they turn one. I do understand that some of the conditions identified early will be extreme conditions that are not the same or similar to DS, so a breakthrough like this may save heartbreak further down the line. And I don’t want to wade into this debate without acknowledging that we are screening for abnormalities and health problems. It’s just that I spend my days immersed in a world where people with Down’s Syndrome are making a difference, they are enriching lives and fulfilling a role within society. They are not something that needs to be screened out of existence.

Let’s imagine you are given power and options when you are pregnant and you can fill out a questionnaire choosing various traits and facts about your fetus – shaping them and their future. What boxes would you tick?

Would you like this child to be born disabled?

Would you like this child to wake up at 5am a lot? 

Would you like this child to be a fan of One Direction?

Would you like them to be slutty?

Would you like them to become a member of UKIP?

Let’s face it, we have little control over what that fetus will become. We can do our best to nurture a good human being. Someone fun, kind, clever… Someone who finds a perfect career and true love and happiness. Someone who looks after themselves and their family. But nothing is guaranteed. The only thing I can guarantee about having a baby, in my limited experience, is that you will love them unconditionally. They will be the best thing you ever did. The most beautiful thing you ever saw. The most valuable life to you. 

It scares me that a screening test will tell you your fetus has Down’s Syndrome and that’s what will define the baby. You’ll imagine a disabled child. You won’t know anything else about them. The screening won’t say their face will light up at the sight of yours. That they will dance like crazy to even a hint of music. They will clap and cheer and cuddle their teddy and say “They did it!” when someone wins on a gameshow. They will stroke your face and say “lovely”. When they hear you say “kitchen” they’ll do the Makaton sign for “chicken”. They will constantly crack you up, surprise you and frustrate you. Your world will revolve around their happiness and wellbeing and you’ll love it. 

The world needs diversity. Ups and downs. If we screen out conditions that cause complications and make people different, where will it end? How bland will life become if we can eventually make everyone “perfect”? It’s a sad future without more people like Audrey, that’s for sure. #dontscreenusout
 
   

  

Nursery times

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Audrey has attended nursery since she was 10 months old. When she was born and the surprise of DS popped up, it never crossed my mind that she wouldn’t go to nursery whilst I was at work. Her needs were those of a baby, it didn’t seem like a stretch for a nursery to care for her.

Anyway, it’s funny how the thought of leaving her was so tough, then suddenly it becomes natural and if you can get them in nursery and have a day off to yourself – woo hoo!

I am very pleased by our choice of nursery, it’s a beautiful building with an amazing outside area (including a pirate ship!), they have rabbits, sensory rooms, yoga space… I remember thinking on the tour, ‘she will have so much fun here, more fun than with me’!

Audrey moved up to the over 2s room in October and settled in much easier than I had thought. After all, she can’t walk and she’s still quite small, but it didn’t phase her. Within a week of being there she stopped saying “yes” and started saying “ok”! Those pesky older kids and their slang!!

We were attached to Audrey’s key worker and were really worried about her adjusting to a new person. Thankfully, we didn’t need to worry. Audrey loves Grace, there is a picture of the two of them in her nursery book and when we get home and read about her day, she points at the picture and says and signs “Grace”. It’s actually a funny thing that I was worried about this other person that Audrey would form an attachment to, but now I feel so warm and fuzzy about it all.

At the end of last year they had parents’ evening and I let Ted go because I went last time. Plus he really hasn’t had a good chance to look around inside since the initial tour and I’ve been around several times. 

Well of course she had a glowing report. She is falling within her age range for everything apart from physical development (fair enough, she can’t walk) and these are broad ranges of course, but she is ahead of her typical peers for literacy! Which is amazing. She loves books. She loves them so much she will often push a leaflet on me and make me read it to her. And all the books we read regularly, she reads along, she remembers key words and points and says/signs things on the page (like rabbit or hat). She sits alone turning pages of books chattering away, making up the story… sometimes she has her dolly, Alice, on her lap so she can read to her. It’s so lovely and is definitely something we have nurtured at home, but is supported very well at nursery.

There are a few things we hadn’t really pushed at home that nursery did the ground work on…

Counting: the first time we counted (I think it was Ted carrying her up the stairs), she joined in and we were blown away. She can count to 3 on her own, sometimes higher, but can count to ten if we are counting along. 

Letters: rather surprisingly the other day she took my address book off the coffee table (it has A to Z pictured on the cover) and she said ABC!

Nursery rhymes: we had thought we’d avoid these, but of course once I’d started taking her to music groups, I realised you can’t really avoid children’s music, it does make kids happy. But the most exciting thing was singing a nursery rhyme for the first time and seeing Audrey’s reaction, realising she knows it! It first happened ages ago with “Twinkle Twinkle” – she lit up and started signing. Then I went to a group where they sung about a turtle “Bubble, bubble, bubble… Pop!” and I had no idea what this song was, but Audrey clearly did. Since then, she has just become so good at singing and signing, we can’t help but burst into  spontaneous rounds of ‘Wind the bobbin up’, ‘Row row’ and ‘Sleeping rabbits’. 

We’ve also had lovely moments at pick up, where other parents have told us that their child talks about Audrey a lot. It used to confuse me, Audrey isn’t always that interactive with other kids (she’s getting more so as she gets older), but I would wonder why these kids would be interested in a bum shuffler that’s usually not happy about another child being loud/in her face (she can be quite delicate!). But Audrey is a good sharer, she is gentle and she loves to say hello, blow kisses and offer cuddles, so I guess actually she’s a good playmate option. I’m always so proud to collect her as I know she’ll come out thrilled to see us “Mummy!”, “Daddy!” and will say “Byeee!” to everyone and blow them kisses.

Here’s a selection of some nursery pics they sent home and a Christmas decoration and picture she made (with assistance of course);

  
Actually, this week she brought home some bread she had helped make! I love nursery.

Stereotypes; there must be more to life?

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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.

   
   

Featuring Down’s Syndrome doesn’t have to be a Catastrophe (har de har har)

~ Vickywoo ~ 2 Comments

This week I watched the Channel 4 comedy, Catastrophe. I’m behind on most things that air after 9pm, so thank the modern world for catch up.

I started series one on the laptop with headphones whilst Ted watched football. He’s always so apologetic about sport on TV, but sometimes it just gives me a chance to binge watch something he might not be that into. In this case, he’d definitely like Catastrophe, but that’s just tough. I enjoyed Sharon Horgan’s ‘Pulling’, so I had high hopes for this programme.

Anyway, this week I got to series 1, episode 4. *Spoiler alert for the rest of this post*! The series is about a couple who get pregnant after a fling and decide to make it work, Sharon Horgan’s character is over 40, so this is classed as a ‘geriatric pregnancy’ (!) and the couple are told their screening results have come back as a high risk for Down’s Syndrome – 1 in 50. As soon as screening was mentioned, my heckles went up and I felt that wave of dread come over me. This is a well written, funny, absurd but realistic comedy, at no point did I anticipate an uncomfortable encounter with them tackling Down’s Syndrome screening as a storyline. So I was scared of what was coming and I reached for Ted’s hand…

Of course the news that they are high risk is considered bad news. Of course it is. I don’t want storylines that sugar-coat reality for the sake of political correctness or being inoffensive. If we had received a high risk result, it would have been bad news to us. In general, people do not wish for their children to be disabled, I can’t fault them for this realistic portrayal of the news.

Anyway, they soon discover the results were even more high risk – 1 in 25 – and they have to make a decision about going ahead with amniocentesis. They have an open discussion about their exposure to DS. Rob has an uncle with Down’s Syndrome (and he showed him his first picture of a boob, so he liked him), Sharon knew a couple with a child with DS, but remembers the woman alone in her 70s, still caring for her adult son. She describes seeing them in the supermarket, the mother looking tired and old. Rob has a fab response  (along the lines of) “well for all you know they went home, smoked some weed, watched Judge Judy and had a great time”. It’s a balanced and realistic discussion about experiences of Down’s Syndrome.

They go ahead with the amniocentesis, but it’s well described by Sharon as something she’s uncomfortable about doing.

And then they get a call with the results… The baby (foetus at this stage) doesn’t have Down’s Syndrome. They are relieved. Again, I cannot fault this, it is good news that would come as a relief. A little part of me is disappointed at this juncture, we’ve followed the story and ultimately, they’ve dodged a bullet, hurray! 

But then they come good. Sharon is waiting in a queue and a beautiful little girl with Down’s Syndrome starts waving at her. At the sight of this child (as is so often the case when seeing a face with DS in the media), my heart swells. I think the mother apologises and Sharon says “She’s beautiful”. 

Yes I had a good cry. I felt they had acknowledged that had their baby tested positive for Down’s, it would have been ok.   I’m sure the feelings were mixed, maybe there’s relief in there, I don’t know, but I certainly felt like this wasn’t a moment for Sharon to think “Phew, I’m glad I don’t have one of those!”, I felt like they were showing that what could have been would have been beautiful, would have been ok.

Anyway, the show is really funny. It’s dirty c-word type funny, so not for everyone (my mum would be appalled), but I’m glad that a show like this could tackle a Down’s Syndrome storyline and do it well.

I tweeted Rob Delaney (just moments after my tearful relief at seeing that beautiful face of a girl with DS at the end) to say I loved it and he replied. I was pretty excited to say the least, he has over a million followers!! And he is a good-looking hairy man who writes an excellent show. Woo hoo!

Audrey has been poorly for a week and has quite a spotty face, so she’s not up for fancy pics, that said, she’ll still blow kisses even when under the weather!

And check out the colour scheme matching card from nursery!

   
 

Friday the Physio Part 2

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What a difference a week can make. After our last physio experience at the new Friday sessions, that left me tearful (to say the least), I knew I had to tackle it again and make the best of it…

We set off on the bus and Audrey was full of beans as usual. Waves and kisses, requesting singing. 

We arrived at the group and we kicked off “walking” over to a table of stuffed toy dogs. The ladies were there welcoming and smiling, I explained how hard I found it and kept saying things like “I’m no good at pushing her, which is why I know it’s good to be here, because you are comfortable pushing her” and “Oh she is really going to hate that” – they (rightfully) picked me up on this and explained I needed to be more positive. We are “encouraging” her, not “pushing” and take on each task telling Audrey “this is going to be fun!” Rather than anticipating her hating it!

Actually, I was surprised at myself, because in general, I do think of myself as a positive person.

Today I was thinking about the ability to look on the bright side. I am generally a glass-half-full person without really giving it much thought. I mean, I don’t think of myself as always upbeat and full of smiles… But the fact is; I am a positive person by nature.

When Audrey was born I remember thinking (when wrestling with the news that she had Down’s Syndrome); what would be the worst thing that could have happened – would I rather this baby was dead? And of course the answer was no. I kept reminding myself that we were very lucky she was alive and that was the most important thing. Was this ‘syndrome’ really the end of the world? No.

Then when we had to deal with her coming home on oxygen, I kept reminding myself that we were so lucky she didn’t need any surgery and that her heart was healthy.

And now we have a bum-shuffler who cannot stand unaided, but I’m so very grateful that she is mobile at all and I focus on her other achievements which feel more important. Audrey can’t walk or stand, but she can ask for food and drink and she understands so much of what we say. Communicating is an amazing thing and it really helps us feel connected to her.
Her nature, just the way she is, naturally gives us reason to be positive. Smiles, giggles, kisses and cuddles – for the most part, that’s what our time with Audrey is all about. There’s no need to dwell on blood tests, physio sessions, developmental delays… In fact, I’ve seen many other parents of kids with DS revel in the fact they get a baby for longer. Time flies, but it’s flying a little slower with Audrey.

Onwards and upwards in our physiotherapy (I say this as Daddy and Bibi are taking her this week!!).

This was us taking a toilet selfie after speech and language therapy last week -which went very well by the way. We are working on two word phrases and since the session Audrey has said “more please” and “more toast please” woo hoo! 

  

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.