Awareness

A World Without Down’s Syndrome

~ Vickywoo ~ 2 Comments
Daddy holding his tiny baby daughter

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

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

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

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

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

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

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

#worldWITHdowns

 

We’ve come a long way, babies

~ Vickywoo ~ Leave a comment

I have a tendency to project. Always wanting to be at the next stage of life, always worrying about what’s next, definitely struggling to live in the now.

Today I sat with Audrey whilst she fed herself a yoghurt and her younger brother napped upstairs in his cot. I took a breath and marvelled at where I sat, how far we have come.

In Rex’s tiny speck of a lifetime (7 and a half months), he has gone from only sleeping in the sling or on me at night, to sleeping in a buggy, cot or sling, sleeping at night (in his Sleepyhead) in a cot from around 7pm to 4 or 5am. He sometimes even settles without a fuss. We sit and eat dinner without the sound of a crying baby and I sleep for one long stretch rather than I’m tiny 1 or 2 hours stints. He is eating well and taking formula happily now the booby is no more. He crawls, pulls to stand, cruises along the furniture, claps his hands and is a happy boy.

Audrey has taken independent steps, continues to amaze us with her language and has an ability to make me cry with joy on a daily basis.

Once upon a time, Audrey wouldn’t eat food off a plate (she was so used to the high chair table). We worked so hard to get her to eat off a plate, but she would only accept one piece of food at a time! I mention this because the other week at Whoopsadaisy I put cheese and crackers on her plate and someone said “She’s having different foods on the same plate now?” And it took me a while to understand what they meant! Because I had forgotten how hard we worked to get Audrey to accept a plate of varied food. Just like I can now give her a spoon and a yoghurt and she just eats (she used to get stroppy and say “Mummy do it!!”).

Audrey asks to use the potty, she often drinks from an open cup. Rex holds his own bottle, he responds well to us signing “milk” and “food”.

They achieve great things and all I can do is think “Yes, but I wish she fed herself every meal time..” Or “Yes, but I wish he was sleeping through until 6.30am…” I need to be satisfied with how far we have come!

I guess sometimes it feels like baby steps (no pun intended), but we are getting there – both of my beauties are coming along and making me proud every day. 

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

Walk the walk

~ Vickywoo ~ 3 Comments

As you’ll have seen, I post a lot of positive stories about Audrey. It’s hard not to. But I want to be honest about something I am finding difficult; the fact that she can’t walk.

When she was born, one of the many things we were prepped for was the difference in when a typical child walks and when a child with DS does, I was pretty confident Audrey wouldn’t be too far behind her peers. I expected she’d be up and running around 2.

Well, we’ve passed her third birthday now and she hasn’t nailed it yet and let me tell you why that sucks…

I feel like she has lost out on a period of her childhood; outdoor activities, soft play, dancing, exploring and running after friends. I know this will come, but her friends have had this kind of childhood since they were 12? 14? 16? 18? months (I’m not even 100% sure when!).

In many ways she’s an easier child for me as a non-walker (less so now we have Rex), although I don’t want her to walk to help me out. I feel like she is being robbed of a typical childhood. It makes her officially “different”. Yes I know she is different, but at this age, kids are just kids. They play with each other at mixed ages and mixed abilities, but not being able walk puts her way behind.

My husband is a bit more laid back about it and I wish I could feel the same. Ultimately I do have to be patient, I can’t let frustration take over because that’s not going to help, but her almost 6 month old brother is rolling and pivoting and getting into things… he will be crawling soon and before we know it – walking too. It seems so crazy how quickly he is getting there and how slowly Audrey is.

But, hey, as I’ve said before, it is best to focus on what your child can do, rather than what they can’t and Audrey’s communication skills have excelled beyond our expectations. She sings so many songs (from Old Macdonald to Queen’s We Are the Champions!), she “reads” so many books and she is really polite – she even says “Thank you Rex” when she has given him a toy. She’s fabulous.

I guess I’ll have to wait for the running and jumping… I’m sure once it comes I’ll be so tired out by her (and Rex), I’ll be wishing for the bum-shuffling days? We shall see.

Here she is working hard at conductive education:



 

 

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…

Typical challenges

~ Vickywoo ~ Leave a comment

It’s early to acknowledge this (given we only have 3 months of experience with a “typical” child), but I’ve started thinking about how different this journey is going to be in comparison to our experience with Audrey.

We’ve joked our house is Audrey-proof, but not child-proof. Audrey picks up things and hands them to us… “Daddy’s” she says, passing me some headphones, “Mummy’s juice” she says proudly, pointing at my glass of drink (not touching it). She is gentle, she is careful and she can barely reach/climb/have the strength to pull things over. Rex will be very different and it’s scaring me already. 

So funny to feel like parenting a “typical” baby is a pain in the bum. “He’s so sturdy!” we exclaim, with worried looks. “He’ll be an early walker” people tell us, and we exchange terrified glances. We are used to slow-mo growth; example – Rex is nearly 4 months old, he is wearing age 3-6 months (stands to reason) and Audrey wore these clothes around 10 months! It really puts into perspective how small she was. How small she is.

And with that we have an almost 3 year old who can’t walk. She started bum-shuffling at 18 months, all that time we had a “baby”. Rex is going to seem like a fast-forward monster child! I already call him chunk and he’s just a reasonable size, poor kid.

I say “poor kid”, but he’s still a real challenge, so it’s “poor us” really. He wakes a lot, still only sleeps well in the sling for daytime naps and can be generally unhappy just hanging out on his play mat. I am really banking on solids and sitting up changing him, I think he would prefer an upright view and he would enjoy some food, but God help us if that makes no difference! Eek.

I still recognise that people must think it’s nuts that I talk about our experience with Audrey as easy (Down’s Syndrome, oxygen canisters, tests and appointments and worries about her future…), but that Rex is hard. But no one has a baby expecting that much of your time together is stressful and he can make things stressful just being so whiny and needy. 

That aside, he is beautiful and he loves a laugh – I can already see that his sister is going to be such a great friend to him- he looks at her with love already and she makes him smile. They are fabulous children and one day Rexy, one day we will look back and laugh about how difficult you were!

Here Comes Audrey… Marching Along

~ Vickywoo ~ Leave a comment

Audrey has successfully walked on her own with a walker (both a standard plastic thing at home and a fancy rollater at conductive education)!

Yes, I cut straight to the juicy detail there.  It feels so exciting and terrifying to think she might be close to walking. 

When Audrey was a baby, I looked at the parameters for children with DS walking (from typical age to 5 the book said) and I thought; “well she will walk at typical age or not much later”, because I wanted to be positive, but also I believed in Audrey. I knew she was the greatest kid with Down’s Syndrome I’d ever known, I was so sure that with lots of help she could hit all those milestones as early as possible.

The reality is, even if we had been super hot on physio and/or lots of crazy gadgets for walking/improving muscle tone, Audrey would still be delayed. She has low muscle tone that is hard to deny. Plus she chose to bottom shuffle rather than crawl – this is practically walking, she has her hands free. So in her eyes, no rush!

As I look at this year, the year she will possibly walk independently, I feel a mixture of emotions. I’ve been so desperate to see her run around like her peers. She misses out on park time, outdoor play and even soft play (you need to be able to climb). However I’m worried about how it will change things – eyes needed in the back of my head? A child that’s no longer happy in the buggy or sitting in a high chair? I know this is standard progression and something mums of typical children have dealt with already by 14 months (is that the average walking age??), but Audrey is 3 in July and I still haven’t had to worry about these things. 

She is just starting to realise that Rex is taking up mummy time, she is calling out for me a lot, following me around and is trickier to get settled at night time. Audrey is really growing up. I love being her number 1, but it’s so hard when I can’t devote all my time to her. I hope her improvement in walking, standing and climbing will help give her some independence and help her to need me less, although I suspect I’m in for many months of struggling with how to split my time between demand breastfed baby and demanding toddler!

We Can Do This

~ Vickywoo ~ Leave a comment

A friend came to visit Rex for the first time the other day. I was explaining how tough we were finding number two, how his nights were getting better, but still appalling, that he was so rarely chilled and happy, that breastfeeding had been a struggle, that the labour wasn’t great, recovery was a shock, that I never wanted to do this again… My usual rant! 

Now, I know this sounds like a depressive visit, but we had lunch and a laugh (promise) and Rex slept on her for over an hour and then fed and slept on me for over an hour, so he appeared to be quite easy.

Anyway, this friend has two grown up children and had easy births, easy breastfeeding experiences, easy babies… She maintains the teenage years are the hardest, so god help us!

Since her visit, something she said has stayed with me. It was along the lines of; “Well I remember visiting you after you had had Audrey and just thinking how amazingly you were coping – because you had a lot to deal with; the Down’s Syndrome, the oxygen, the emergency c-section… And you were taking it all in your stride. Now you have a more common situation and you’re freaking out! This is dealing with a newborn, you’ve handled a newborn with lots of other challenges, this should be the easy bit!” And I guess she’s right. We’ve forgetten what we went through; having a baby in the special care baby unit for 3 weeks and bringing her home attached to an oxygen canister for 6 months, that’s not a standard start. But I know most will consider the shock of a baby with Down’s Syndrome and how awful that must have been. I don’t want to trivialise this, it was like a grieving process, it was rough, but somewhere down the line Audrey became more than Down’s Syndrome. She became our daughter, the one we planned for and made with love and that period of confusion has become so insignificant in the scheme of things.

Having Audrey, learning from her, knowing her, it outweighs the initial upset a billion times over. As a cheesy social media motivational quote would say: You have to experience the dark to appreciate the light.

And so we come back to Rex; we’re in a dark time and hopefully we’ll appreciate him more once we get out into the light?!

In the meantime, I’ll try to remember this is what millions of people are experiencing right now – sleep deprivation and an unsettled baby. It will get better… But please let that be soon.

World Down Syndrome Day 2016

~ Vickywoo ~ Leave a comment

  
Here we are again, our third World Down Syndrome Day. I feel like I’m always banging the DS awareness drum, I really hope it’s not a bore to people.

This time around we’ve got tiny Rex with us, depriving me of sleep and making me a little bit insane (well the hormones post-pregnancy are). So it’s a crazy time. But one thing Rex has done by crashing into our world and turning things upside down; is shine a light on just how wonderful his sister is. I’m not saying him being difficult makes us realise how good Audrey is… Well… I guess I am a bit… But I know he doesn’t mean to, he’s just being a demanding newborn, wanting to feed and to sleep in our arms, crying too much and pooping and weeing at the wrong time… But in amongst the stress and tiring times, we have a beautiful little girl who is unaffected by the chaos – but has the sensitivity to ask if we (mostly Rex and I, the criers!) are ok. She’s offering cuddles and (heartbreakingly), saying and signing “Mummy sad”. She is playing happily by herself, casually saying “Hi Rex” when we bring him into the room, offering him cuddles when he cries. Her emotional intelligence is incredible.

And so, on this day, I celebrate Audrey for being our daughter, someone we love now more than we ever thought possible, who happens to have Down’s Syndrome. And if you let that define her or you make a judgement about what she might be like based on this syndrome, you will be way off the mark. Because I know there are many who are having scans and taking the screening test to find out their chances of a baby with Down’s Syndrome… And some are doing this to “prepare” (they have no intention of aborting), but want to know what’s coming. But many are geared up for aborting if the chances are high – they are thinking they couldn’t handle a disabled child. They may even be worrying about all the difficulties  they’ll face. They will probably be wondering what kind of life can someone have with a learning disability? Some may even say that livng with a disability; “well that’s no life at all”. Of course I can’t guarantee things won’t be hard, that their won’t be health issues and struggles, but I can tell you about our daughter with Down’s Syndrome. I can tell you that our experience has been so amazing and that her life – wow, she loves it to the max. She’s having a great time and we love Audrey more and more each day. Now that Rex is here, we look at her as a big sister and we are so proud and excited by the prospect of them being friends forever. We are also thinking about how much she will teach him. 

Happy World Down Syndrome Day everyone!