T21

My world 

~ Vickywoo ~ 1 Comment


OCTOBER = Down’s Syndrome Awareness Month.

This seems to come around so quickly and  I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts. 

Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.

I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?

Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.

My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?

Well, maybe we can’t… But maybe we can, so we’ll keep trying.

We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.

And so I’m going to point you in the direction of this (highly anticipated in our community), documentary; 

http://bbc.in/2dkMib6 

And this great article;

http://www.telegraph.co.uk/women/family/sally-phillips-my-son-has-downs-syndrome—but-i-wouldnt-want-to/

And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.

I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.

One thing I’m 100% sure about is; my world is better for having Audrey in it. 

#worldwithoutdowns

My daughter 

~ Vickywoo ~ Leave a comment

I have a 3 year old daughter. She likes to play with my hair whilst she sucks her thumb.

She loves music and dancing.

She adores books.

She gives epic cuddles.

She likes watching Mr Tumble and Justin Bieber videos.

She reenacts ‘circle time’ from nursery at home with her toys.

She loves fruit.

Over-used phrases since she arrived include “I love you”, “You are so pretty”, “You are so clever”, “You make Mummy happy” and “Cuddles!”.

She is everything I ever dreamt my little girl would be and much more. As each day passes I see us together in the future; singing, shopping, scoffing popcorn at the cinema… All these simple things fill me with joy and excitement. My heart swells when I hear her call me “Mummy”.

…And I will just add that I still have to suffer the obligatory tantrums over presenting her with rice cakes instead of breadsticks or asking her to put her jacket on – it’s not all plain sailing.

But oh she is fabulous… Entertaining, amusing, cute as can be and incredibly emotionally intelligent (if she so much as sniffs a crack of upset in my voice she comes over “Y’ok Mummy?” – head tilted to one side in concern, offering a cuddle).

When we go out, I feel like I am proudly presenting her to the world; “Behold! My beautiful offspring!”.

The other night I put her to bed and laid down with my face next to her’s and said “I love you” and she stroked my face and said “I love you” right back. It was pure magic.

I fall more and more in love with her everyday.

Nothing out of the ordinary here, I assume many mums will read this and think, “Yes, sounds like a standard mother-daughter love.” And it is.

It’s just my daughter has Down’s Syndrome. So when she was born, someone gave me some news and some literature and it was like putting a sticker on her that said “This one is going to be a little bit rubbish and not meet your expectations”.

 

Thankfully that was bollocks.

This post is also on Selfish Mother; http://www.selfishmother.com/mother-daughter-love

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…

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:

  
 

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.


  

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 🙂

   
 

A day in the life

~ Vickywoo ~ Leave a comment

So I may have said this before, but having a cute kid with lots of hair and glasses is like stepping out with a celebrity. She gets so much attention. 

Today this is roughly how our day panned out…

9am: off out to catch a bus to our group for babies with special needs. See bus, do an enthusiastic sign for “bus”, wave the bus goodbye and see smiling faces on the passengers who have witnessed the joy at the event.

(We had at this point, just missed our actual bus, so we popped off to pick up a coffee from a favourite local trendy place).

9.15am: wave at beardy man in queue, get a wave back. Marvel at pastry treats behind glass (“Wow!”). Wave at everyone and anyone, receive wave back from man that Mummy had incorrectly pre-judged as grumpy.

9.20am: back at bus stop. See dog, sign “dog” and attempt to reach the dog from the sling position. Mummy thanks the man for stopping. Drunk man passes and compliments Audrey’s “bins”.

9.30am: get on our bus. Wave at people out the window, dance when the bus is stopped in traffic and the engine sounds like music (to Audrey’s ears).

9.35am: bus stops for a while by the shopping mall. Wave at man who isn’t looking until Mummy points out a willing participant who is watching from the bus stop. Waving back and forth is fun, but starts to get a bit uncomfortable once we are stopped there for a while. Mummy looks in opposite direction.

9.40am: motion of bus too much, fall asleep on Mummy and miss a dog that gets on the bus and sits right by us.

10am: arrive at reception for baby group, bum shuffle to the centre of the room, wave and say “Hi Daddy!” to the two ladies in reception. Throw ball.

10.03am: enter room for Early Stages group, greet all nursery nurses with a wave and “Hi!”, see tent filled with lights and say “Wow!”.

10.03-11.30am: greet any arrivals with a wave. Play at every station, but not for too long, lots of bum shuffling to do. Successfully make a choice at singing time (choosing is hard, Mummy advised offer row row and it’s a no brainer). Enthusiastically take part in all songs, clap and say “Yeah!” at the end of each one. Mummy beams with pride.

11.30am: have lunch. Make lots of yummy noises and copy speech and language therapist when she mimes rubbing her tummy. Everyone marvels at the signing.

12pm: bum shuffle over to the mirror and amuse everyone with babbling. Say what sounds like “Hi ladies!”. Leave with Mummy, wave bye bye and blow big kisses!

12.10pm: wave at girl at bus stop, who waves back and I think remembers us from last week.

12.20pm: get on bus, lady sits next to us and chatters at Mummy, wave to lady. Lady compliments eyelashes (Audrey’s, no one cares about Mummy’s anymore), marvels at Audrey’s old lady name.

12.30pm: fall asleep.

1.30pm: wake up, surprised to find we are on another bus. Stare at lady next to us as she has amazing sunglasses and a crazy hat on. Blow her a kiss.

2pm: arrive to play in waiting room ahead of eye test. Wave to everyone in room.

2.05pm: have to look at a light and some tiny toys, do ok, but not thrilled about it. Have eye drops and cry. Lady says Audrey really looks like Mummy when she is about to cry. Hmmm. Wave goodbye to lady as if she is a best friend and not the mean lady who put drops in eyes.

2.20pm: more crying in waiting room as older child knocks down a tower of bricks. Smiles and clapping once Mummy sings.

2.40pm: more eye test annoyance. Shake hands with eye lady. Lots of wriggling and noises of discontent. Eat rice cake to recover.

3pm: bus home, not feeling the best. Lots of thumb sucking and cuddling with Mummy.

3.30pm: in the shops. Lady comes to compliment glasses. Give her a smile and wave despite feeling under the weather.

4pm: more waving in the supermarket, lots of comments about those lovely rosy cheeks (ezcema!).

4.15pm: get home, play with toys and have some down time after all that waving.

The end.

No photos taken today, but this was last week skipping radio channels for our daily dance party…

  

Update: here she is today. Red cheeks and all:

  

Getting home

~ Vickywoo ~ Leave a comment

Audrey was in the baby unit for 3 weeks, as I type that now it sounds like no time at all, but back in July 2013 it felt like forever.

I was in hospital for 6 nights after the c-section, shuffling up from floor 12 to floor 14 to breastfeed Audrey. We then spent a week or so commuting in on the bus to our “part-time” baby. It was definitely not the start we imagined.

Audrey was allowed home with oxygen, so she had to wear a cannula and be plugged into a machine in our hallway or to a travel canister whilst out and about.

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It felt like such a huge burden to have that tube on her face… Especially as the weeks passed and the sleep studies showed she still needed it. But again, I can look back now and feel relieved that we only had to deal with it for 6 months, such a short space of time in the scheme of things. There’s still a chance she will need it again in the future, but for now we are so happy to have her free of tubes and plasters!

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