Passing the time

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

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

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

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

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

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

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

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

  

Does size matter?

So, people are always interested in your child’s age for some reason. It’s the height of small talk and will inevitably lead to some comment on size and developmental milestones (“Is she walking?” Etc).

I’m interested to know if mums of “typical” children ever feel like a comment on their child’s size is a criticism – if it ever makes you feel like you’re doing a bad job?

You see, Audrey is small. The last time she was weighed, she was travelling around the 9th curve on the Down syndrome chart. For those of you who don’t know, people with DS generally grow slower and are smaller than typical people. So the 9th on the DS chart is smaller than the 9th on the typical chart. 

She is 22 months old, wearing mostly size 9-12 months (just moving to 12-18). So basically she’s the size of a one year old and is nearly two. This means people are usually quite surprised by her age or that they guess her age and are way off. In the early days I definitely felt like I was to blame. It was my breast milk feeding her and I so wanted to make her grow big and strong, but she just kept slowly crawling up the lower curves. She was refluxy, so it was tricky getting her to gain weight, but once we started her on solids, she gained some good chunk. Unfortunately she was still weeny and yeah, it’s great to be petite if you’re a lady, so I’m sure this won’t be an issue in time, but right now, whenever I meet people (bus, supermarket queue…) and they say “Ahh, she must be about 10 months?” and I have to say; “Well, no, actually she’s 22 months”, I feel uncomfortable about it. I feel like they are wondering why on earth is this kid so small? And it’s often followed by the question “Was she premature?” and then I have to say “No, actually she was 6 days late”. Queue another surprised look.

Audrey’s size has skewed my idea of what size a baby should be, so I can’t really enter into the guessing game when meeting a new baby, because I have no idea what age to go for. In fact, how does everyone else know the average size of a 10 month old?! I didn’t know pre-Audrey and I certainly don’t know now. And why do I think that big bouncing baby = successful mother? 

She is a greedy piglet and we feed her a lot. In fact it was Audrey’s ‘decision’ to drop her nighttime bottle in favour of a snack! Ha. 

Anyway, if you meet someone and enter into the small talk of baby age, please try not to be overly shocked by their answer (whether the baby seems tiny or huge to you), either way, I’m sure the mummy won’t be thrilled that you think their child is mahoosive/minuscule! Thanks!

Audrey with a (giant!) teddy and her friend Edith (over a year younger than her!)….

  

Aim of the game 

Today I am attending a Mothers Meeting (http://mothers-meeting.com). I got my ticket after a friend vaguely explained the event to me and said I had to go as she is on holiday and can’t make it.

As far as I can gather, it’s a networking event for like-minded mummies; those of us that like clothes and coffee and design and cool stuff. From what I’ve seen on IG, a lot of the mums attending are creative types with their own businesses. I’ve had an email that says we will all have a little opportunity to say something about ourselves(!), so I thought I’d talk about this blog. This is the closest thing I have to ‘work’ at the moment!

So it got me thinking, what is my aim with this blog? How will I describe it? It’s not just mummy ramblings… Honest!

My main aim is sharing the ups and downs of life with a child with Down’s Syndrome. More than anything I just want people to understand that is nothing like you might imagine. 

Imagine having a disabled child. Depressing isn’t it? Picture the mother of a child with special needs. Is she mumsy? Is she Florence Nightingale?

I guess I want people to know it can happen to anyone, rich or poor, cool or uncool, caring and uncaring. Kids with special needs are born all the time and the people that have them, love them and do normal things.

One thing that always gets me a bit ‘ranty’ (apart from too much red wine), is the fact that 9 out of 10 women in the UK (and I believe it’s the same in the US) abort after a near-certain Down’s Syndrome prenatal diagnosis. So the majority of kids with DS that exist were surprises. 

I guess there are two reasons to raise awareness; 1. To support those of us that had the surprise (share our feels of disappointment, grief, guilt, confusion and how we moved on) and 2. Help women who receive the prenatal diagnosis make a decision based on what it is really like to have a child with Down’s Syndrome (it’s not as bad as you imagine! I promise you’ll love them and they’ll be amazing!).

I appreciate we get a lot of love from pro-lifers, but Audrey isn’t here because we are anti-abortion (although I don’t think we would have aborted, I’m not anti-abortion in the right circumstances). But I do think it’s terribly sad that couples might make the choice to abort a child based on fear and a stereotype of what ‘disabled’ or ‘special needs’ is.

I mean, ‘special needs’ isn’t cool. It’s not sexy or fun, it sounds awful to me. I’m hoping our Instagram and blog can help people realise that it can be cool! And yeah, maybe one day Audrey will want to be sexy (and we’ll still feel icky about it, just as my parents did when I started wearing mini skirts and crop tops), but a part of me will also be thinking “Yeah, go Audrey!”, because she can be whoever she wants to be and that’s exciting!

Today I’m going to meet some cool mums and (hopefully without coming across as a ranting crazy), bang the drum a little for Down’s Syndrome. Let them all know that it’s not the end of the world and that it can be cool. I mean, look at our cool little dudette…

   
   

A day in the life

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:

  

Stuff and things 7

So I somehow manage to be busy, despite not having a job since November and mostly drinking coffee and entertaining Audrey.

Since she started bum shuffling, it’s been surprisingly ok. I mean, I thought a mobile child meant endless running around and use of the word ‘no’; exhausting basically. Yes, she likes to tackle the electrical wires and empty bags of stuff everywhere, but mostly the exploring is safe and it’s a lovely feeling watching her travel. 

In other news I now possibly have lots of people I know reading this, thanks to my husband’s share on Facebook. Hello.

Aforementioned husband is studying for an exam in June, which means less Daddy time at weekends (which is what us stay-at-home-mums live for), so I’ll be glad when that is out of the way.

My job hunt may finally have proved to be fruitful… More on that as it unfolds.

Audrey is coming on in leaps and bounds, her signing is bloody brilliant. She is a genius. We had speech and language therapy last week and I plan to start her swimming soon. Only bad news is that she has to have the thyroid function blood test again, booo. They didn’t take enough blood last time and it was so traumatic pinning her down for the event 😦

So, I had decided I would blog at least once a week, but have failed at that. Will keep working on it… Although sometimes I don’t have much to say, so don’t want to just ramble! Which is happening now… Over and out.

   
         

Friends and Family

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…

   
                  

Eyes

In my day, it was called a lazy-eye or being cross-eyed. Apparently we now call it a squint, so Audrey has a squint.

If you had told me years ago that my child would have a squint, I’d have been pretty upset about it. It wasn’t exactly a blessing as a child and I have always thought how unappealing it must have looked – people cross their eyes to make an ugly face and well, that was my face!

I have memories of being bullied about this at primary school (under 10 years old), as well as at secondary school, but at a very young age it didn’t bother me. Although I do remember one incident from when I was probably around 6, when I was at home crying to my mother because a boy had been teasing me and calling me cross-eyed. I recall my mum telling me that the children were teasing me because they were jealous of my “beautiful eyes and lovely long eyelashes” and I just thought she was deluded. Because it certainly didn’t feel like I had beautiful eyes.

After some time with glasses and a patch, I had an operation around the age of 4 to correct the lazy eye. Shortly after, my other eye decided it too couldn’t be bothered to work in conjunction with the other one and face forward, so I had another operation shortly before my 8th birthday.

I don’t remember the first operation as such, just being in a bed with my parents at my side, constantly doing crosswords or playing this join the dots game my dad always played (that was a little like noughts and crosses). Oh and I think my parents’ best friends bought me a Minnie Mouse cuddly toy back from Disneyland around that time. Other than that, no pain or scary memories.

The second time I remember more clearly. I had a private room (with a TV!), I made friends with an old lady down the corridor (most other patients were there for cataracts), people gave me presents (I got a personalised Peter Pan book, very cool) and I had a terrible reaction to the anaesthetic. I awoke and became some sort of crazy angry child, thrashing my arms, trying to rip the patch off my face, shouting I was going to be sick… no I’m not… I still remember it so vividly and how my mum said I shocked all the nurses as I had been such a lovely little girl who turned!

Anyway, funnily enough, the fact that I’ve been through the operation (twice), makes the thought of Audrey needing surgery not such a big deal, my main worry would be her being on the receiving end of any bullying.

Although my operations did much to ‘clear it up’, my eyes were (and still are), subject to the odd turn in. It was always bad in photos (and I hasten to add I have never been able to control it and was only semi-aware of it happening) and if I have to look someone in the eye from a distance, I always worry it is going to happen, even though most people who have only known me in the past 10 years or so say they have never seen it happen.

But as anyone who has lived through secondary (high) school knows, if you have an obvious “flaw” of any kind, you are screwed. And it’s difficult to forget how brutal teenagers can be. Around the age of 12 or 13, a song came out called ‘Kriss Kross’. Wow, spectacular timing. It was sung at me a lot. There was also a horrible girl who used to ask me what it was like to have “bumble bee eyes” (wtf??), her profile now sometimes pops up on Facebook as someone I should befriend, ha. 

Eventually my eyes were getting better and better and people seemed to have short memories as the bullying faded away. Luckily, shortly before turning 15, our dog bit me and I had a hideous scar on my lip as a new focus for the haters (!); but that’s another story…

Anyway, what’s odd is that I don’t think Audrey’s squint is ugly. I sometimes forget she has one (at her last eye appointment we were asked if she squinted less whilst wearing her glasses and neither my husband or I could answer the question). I’m actually surprised by how little it bothers me.

But then sometimes one of us takes a great photo of her and there is the squint… And I think; “If only her eyes were straight, that would be a lovely photo”. And I feel bad about that. Because it’s not a big deal and like my mother before me, I genuinely think Audrey has the most beautiful eyes. 

The fact is, kids are bullied even if they have no obvious things to pick on (maybe they are too pretty or too thin or too clever), so we can’t do anything to protect our little ones from the harsh realities of school life. But as I passed a noisy school playground the other day, picturing what Audrey might be like as a little girl in her uniform, I decided she will be ok no matter what life throws at her, because she is awesome and she has so much love in her life.

   
   

On the move!

Watch out world, Audrey is on the move! 

It’s been a surprisingly underwhelming transition from random bum-shuffling (pivoting in a circle, sometimes resulting in movement by chance) to purposeful bum-shuffling (moving her legs to travel straight ahead to reach a specific target – usually a shoe or rucksack or the coffee table).

I expected whoops and a fan fare, but we were more like “is she moving forward properly?” And it was tested with her interest in a shirt sleeve dangling from the ironing board (as you do). Ted kept moving back and Audrey kept getting closer… Then we knew. Mobility was here.

When Audrey first rolled, I was cheering like crazy person and filming her to capture the milestone. I decided she was a genius and I wanted everyone to know what she had achieved at that very minute. She was ahead of her “typical” peers, it was very exciting.

Fast-forward to now. Her “typical” buddies are all walking (of course) and have been for about 8 months or more. Some where along the way the pressure for her to smash records and be a genius baby wore off. I guess I realised that one day it just won’t matter when she started moving. She’ll be walking alongside me and I’ll probably have a few little moments in my head (“yippee hurrah she’s walking!!”), but eventually it’ll just be something she does. I mean, it can be a little odd having a toddler who doesn’t toddle, but you get used to it. She does other things that are pretty great, like signing lots of words, dancing like a pro and an amazing elephant impression.

But now she also moves. Which is pretty major, so why the lack of fanfare? Well, she’s not very fast, so it’s not causing major stress in terms of baby-proofing (yet), in fact, she can sit still for quite some time when occupied by toys or music. I guess I also feel less inclined to prove she’s “achieving”, whereas before I wanted to be sure people knew she was doing well and progressing, I think I’m more comfortable with who she is. Life isn’t a competition; not even for kids with developmental delays. We’re not trying to beat her DS peers to the finish line. It still feels like Audrey is growing up ridiculously fast, even though she’s traveling at a much slower speed than typical kids, so why would I wish this time away?

Anyway, in the interests of full documentation, Audrey started her purposeful bum-shuffling on Saturday 28th March 2015.

   

   

Stuff and Things 6

We have just (well it’s been a couple of weeks now) clawed our way out of a dark time of illness. Ugh.

Audrey and I had a flu bug, one that really hit her hard. It was difficult to imagine us getting back to ‘normal’! Lethargy, lack of appetite, coughing, snottiness… But worst of all: no smiles. For 2 weeks. But it felt like forever.

But here we are on the other side and wow, has she come out of the darkness and into the light. It’s been amazing, Audrey’s signing has really progressed and her bum shuffling has gone from accidental circling movement to definitely moving forward purpose. 

The signing means we feel like we’re having proper conversations with her and the movement, well that’s just terrifying! Our flat is far from baby proof.

I’m still on the job hunt but I don’t really mind as I get to spend more time with Audrey. Easter is approaching and we will have some family time and who knows… maybe Audrey will taste a little bit of chocolate if she’s lucky.

World Down’s Syndrome Day 2015

21st March is #WDAD15 (World Down’s Syndrome Day). A time to raise awareness, raise money and raise a toast to that special person with an extra chromosome who has affected your life.

A year ago, Audrey was just 8 months old when we attended a local gathering and met lots of DS families… and faced seeing older children and adults with DS; which was something that definitely scared me back then. We came away feeling good. For me, raising awareness is predominantly about showing how ‘normal’ (whatever normal is!) life can be with a child who has DS. Of course things are different, but those early panics brought forth feelings that nothing would ever be the same again… That this little baby girl would have a difficult and sad life. So I want my blogging and instagramming to show that Audrey’s life isn’t a struggle, she’s not suffering, she’s just getting on with things and she just so happens to also be incredibly beautiful and wonderful!

Mixing with other families serves to strengthen the feeling that ‘everything is going to be ok’. The surprise of a child with DS can make you feel like your world has been crushed, when in fact it’s just shifted a little. You may end up on a slightly different path to the one you planned, but isn’t that what makes life great?

People said to me that Audrey would teach us a lot and initially I thought that was just a cheesy statement that gets dug up to make you feel better. But just 20 months in and it’s so true. She has taught us so much already. Priorities shift when you have a child, but I also think I look at life differently.

Isn’t it great to have people in the world who challenge your view of beauty? And make you less judgemental? Making you appreciate the smallest things? Well that’s what Audrey has done.

I never could have imagined that I would become this enthusiastic member of the Down’s syndrome community, but here I am, sharing our story and being thankful for Audrey everyday. She is the love of our life and we are so excited to watch her grow and learn. And how amazing is it that social media lets us watch other little ones with DS grow up too? We can all be connected from all around the world, sharing our ups and downs, giving support where needed. 

Happy World Down Syndrome Day (taking out the ‘s this time for the Americans!)! 

Oh and of course, here she is… Will try to get pictures of us at the local WDSD event and post them later.