Love

Audrey turns nine!

~ Vickywoo ~ Leave a comment

When the birthday comes around, my musings about the past, present and future come too. So here we are. Nine years of Audrey.

My summer baby

I guess I would normally be talking about how far we’ve come since the surprise diagnosis postnatally. Sharing positives, expressing how much we love and appreciate her, but it’s also worth talking about the not-so-super-fantastic things about having a child with needs like Audrey’s.

You see, in the early Instagram and blogging years, I read a few things other T21 mums said about pushing the whole “cute” angle with Down syndrome which can be damaging, and belittle the experiences of those facing the reality of a more grown up child with DS. “It’s no so cute if they’re 18 and still in nappies” etc.

Not everyone’s reality is a “capable” child. But at the time I just felt that, well, my child is cute and loveable and easy going – I can only write and represent my own reality, right?

Whilst that remains true (I can only write about my experiences), I see more and more as Audrey grows, with the challenges we face/will be facing, why those families might feel the “cute” loveable baby that’s “just like other babies” angle is a bit icky.

Because Audrey is fabulous. She’s awesome. A lot of fun, a kind and sweet little girl. But she’s also not. She’s whiny, difficult, stubborn, she can be mean, unkind, naughty and hard work. Well, all kids are complex and can be kind but also mean… Audrey’s ability to be both wonderful and a pain in the butt is clearly something she has in common with neurotypical kids.

But the real “difference” – the real area where I feel like the mother of a child who is disabled/neurodivergent/has additional needs, are those things that separate her without question from her typical peers.

Running. Audrey likes to run down the street ahead of us. She’s pretty good at stopping at the kerb (but that’s not 100% guaranteed), but it’s still very stressful. In crowded areas, she could get lost or knocked over, roads with driveways or entries to parking areas etc are unsafe and it’s especially uncomfortable if she is able to turn a corner miles ahead of me. She loves to be free and she enjoys doing this. If Rex did the same, but I asked him not to, he would stop. Audrey on the other hand, often takes great pleasure in defying me. I can walk down the street with her younger brother and he will hold my hand, listen to me and walk sensibly. A walk down the street with Audrey can be like that (rarely) but more often than not, it’s stressful,

Complaining. This girl can whine. She can use this skill to get what she wants, but if we do stand firm, she’ll just keep doing it even if it is ruining everyone’s experience. She’ll whine if we are watching a TV show she doesn’t want to watch. She’ll whine if the walk we are taking is too long. She’ll whine if she wants to go home from somewhere we’ve just arrived at. She’s rarely shy at saying what she’s thinking, especially if that thought is “I don’t want to do this”.

Stopping. Preferable to the running? I’m unsure. The running fills me with fear, but the stopping brings out a very angry grown up mum side to me. I have very little patience with her when she just sits and refuses to move. It drives me mad. As she gets bigger I wonder how I will move her. Obviously I hope she’ll grow out of it soon.

A recent stop and sit.

Developmental milestones. This is a big one. Where other parents of nine year olds are eyeing up how close they are to an independent kid… that feels a very long way off for us, because it is. We are not even at the stage where we can trust her out of sight in the park (which is fine for her six year old brother), so getting to a stage where she’s maybe walking to a friend’s house around the corner or making us tea – that’s not even close. I know I am going to struggle when parents of typical kids start to discuss how much easier things are, and what it’s like to leave behind those stressful years of doing everything for your child… when I shall remain in it. Still reading bedtime stories, still wiping her bum…

Physical barriers. Audrey finds climbing, uneven ground, stairs and all sorts of fairly basic physical things tricky. She’s always going to have to work that but harder at things like this and it’s a shame because she loves sport, but it’s not always accessible as she can’t keep up with others and is a bit fragile (a good example would be that she loves kicking a ball around, but the reality is, playing actual football she will either never get a look in (too slow) or will get hit/kicked/knocked and be upset and want to stop). She can’t take part in the same clubs an activities that typical kids can without additional support.

Repetition. This kid can repeat and repeat. A good example would be: on Mondays, she has an after school club which means she needs two snacks (one for morning, one for after school). If someone so much as mentions “Monday” Audrey will say what club she does and that she needs two snacks. She’ll mention this on Sunday night, in prep for Monday. She’ll mention it on Monday morning, so I don’t forget. She’ll probably mention it when I collect her. And she’ll no doubt say at some point in the week when we discuss what we are doing Thursday, and she’ll feel the need to say that on Mondays she has two snacks. She is that repetitive. Yes some of it winds me up. But what I always think is – if I can only just about handle it, when I love her to bits, do other people just find her crazily annoying?!?

Societal barriers. There is no escaping that Audrey’s options are not the same as her brother’s. If she wants to do an after school club, I don’t just sign her up and shove her in. And the obstacles will increase as she gets older (for example, when Rex is a teenager, there will be no need for “childcare”, but can the same be said of Audrey in her teenage years?). And once she reaches adulthood, we have a new level to navigate (education, work, living arrangements, independence, life skills). I am not expecting an easy ride.

So there you have it, a little “happy birthday Audrey” with a big helping of real life. Audrey is a complex being! Not just the cute and hilarious kid that makes me proud. She is all of the things. She will need more help than her typical peers, but we are up for it. And nine years on from holding that scrawny little thing that looked like an orang-utan, wondering what I did to deserve a baby with Down’s syndrome, at least now, despite everything, I feel like it had to be something good.

Mother’s Day 2022

~ Vickywoo ~ Leave a comment

Is it me or is every holiday, awareness day, celebration, commercial nonsense etc now much bigger than they used to be? World Book Day is like Halloween, Halloween is like Christmas and Christmas is… well it’s still Christmas but it starts in November.

Mother’s Day for me was always a time my family got together because we usually got together for a roast on a Sunday anyway. The only difference would be bunches of flowers and boxes of chocolates for Mum (she liked colourful arrangements and the smell of freesias, walnut whips and cards with ridiculous cheesy poems in).

Now the Mother’s Day machine is so big I get a an email from retail companies a month in advance asking my if I want to opt out of the barrage of gift options. It’s nice I can opt out (not having a mother or a mother in law), but it’s also annoying receiving those emails as a reminder of that.

My last Mother’s Day with my mum… I think I actually saw her on the Saturday. I think that was the day a lot of family came to gather around her bedside. She was at home, in a bed in the living room, dying of cancer. Just over a week later, she died. That was 2017.

You would think I’d be over it by now. I tell myself; well, if she was alive you’d still be holding the phone away from your ear when she tells you a long and pointless story and won’t let you speak. You’d still be annoyed when she expects you to have watch Britain’s Got Talent/Coronation Street and get ready to discuss it. And she wouldn’t drive down to visit you anyway as she’d grown fearful of driving “far” in her old age.

But that’s not the point. I still struggle with the why? It just feels so crazy to me that my sister had her mother her entire life, because her life ended at 45. And likewise my mum had her mum her entire life, but that’s because she died at 73 and good old Nan died at 101, three years later. My sister and my own mother never felt the pain of losing a mother, but I felt the pain of losing them.

I went to town on my own to watch Steven Spielberg’s West Side Story when it came out (it was wonderful). I expected to be a big sobbing mess because it was my mum’s favourite film and we played “Somewhere” at her funeral. I had a few little cries, but I made it through without becoming a mess!

Weirdly, I only realised at the moment it started that my mum would never see it, she would never even know they remade it so beautifully and that made me sad. I don’t normally dwell on what she’s missing out on, I’m usually more focussed on my kids and what they’ve been robbed of – the special grandparents experience that I had. Ultimately I was uplifted by watching this film that meant so much to my mum. When Tony sang “Goodnight, goodnight, sleep well and when you dream, dream of me…” I suddenly remembered how my mum used to sing that to us all the time at bedtime. A tiny thing that was part of our childhood and something I can’t tell my mum I remember and still treasure.

Mother’s Day is at least mine now. I am the mother of the day. And I know I’ll see lots of lovely posts about those of us who don’t have their mothers, are not mothers ourselves, have a difficult relationship with our mothers and so on… and I have the joy of my two magical children to help me through, but it will still be a day tinged with sadness for me.

Of course once it’s out of the way there will be plenty of Father’s Day opt out emails flooding into my inbox to contend with.

Children’s picture books that deal with loss and death.

~ Vickywoo ~ 1 Comment

I usually like some sort of alliteration or pun in blog post title, it but in this case, like some of my favourite books about loss and death, I thought I’d be more direct.

Ted and I have lost a lot of loved ones and know that we will lose many more, because, hey that’s life (and death). We definitely both feel that losing our parents before the age of 40 was too soon, but the real shame is the children no longer having any grandparents.

Both grandfathers passed away before the kids were born, but our mothers died having known both Rex and Audrey and I was keen to find stories that would in some way explain what happened or at least let them explore the concept of loss.

When my mum died, Audrey was three and a half and Rex just one year old. I headed to our local children’s bookshop to ask them for books they would recommend and I came away with our first title on the subject, The Memory Tree (a couple of other titles were offered, but I’m an artwork snob to be honest) . A few others were searchable on the internet or mentioned by friends (or even kindly bought for us by thoughtful friends), but as our picture book collection grew, I realised there are several that you wouldn’t necessarily know tackled this subject.

This list is by no means exhaustive, but I am confident you’ll find a title or two you hadn’t heard of before. I also think these are great books just to start a conversation about loss and death that we might otherwise avoid having until it’s absolutely necessary. In my experience, small children are incredibly brutal and matter-of-fact about death, so in a way, it’s good to catch them at this age when they have no fear and ask a lot of questions!

These are in no particular order and FYI when I write about each book below, please expect spoilers, not that I expect anyone to be precious about the plot of a children’s picture book, but just in case!

The Memory Tree by Britta Teckentrup:

A simple story about a fox who falls asleep (forever) and a tree that grows in his place, as his woodland friends recount stories of time they spent with fox. This is a gentle book and it certainly made me feel better about my own loss – focusing on the legacy someone leaves behind and all the lives that person (or in this case fox) touched.

Duck, Death and the Tulip by Wolf Erlbruch:

Duck Death

Recommended by friends, I love how this book represents death as a skeleton and is much more direct than other children’s books. It’s simple and tender and it made my children ask some interesting questions. Death is always there and when you get to know him, he seems quite nice.

Looking for Yesterday by Alison Jay:

This one was a gift from a good friend who spent the day with Audrey and bought her some books. The good news is: no one dies! It’s about a boy who wishes he could relive his best day and his grandfather explains why you shouldn’t go chasing after yesterdays, you should be looking forward to other wonderful days to come. A story that shows what a life well-lived is all about – dancing, ice cream, mountain climbing, love…

Waiting for Wolf by Sandra Dieckmann :

Waiting for Wolf

So when I say there were some classic stories about loss and death that I chose not to buy because the illustrations didn’t appeal… well this one has the kind of artwork I was hoping for.  A beautiful, gentle tale about two friends (a wolf and a fox), wolf is older and leaves fox with the line “Tomorrow I’ll be starlight” and when fox can’t find her wolf friend, she pulls the blanket of stars around herself and spends some time in darkness. A book to treasure.

Up the Mountain by Marianne Dubuc:

Up the Mountain

This was a lovely find from my mother-in-law, who no doubt saw the relevance of the story when she bought it for the kids. An older badger meets a young cat on her usual trek up the mountain and they start a friendship, which leads to many more visits, until badger starts to become too old and tired for visits up the mountain and cat has to go alone… A tender ‘circle of life’ story.

The Goodbye Book by Todd Parr:

A very simple and colourful book about the emotions when someone has gone (in this case a goldfish has lost a goldfish friend). A good chance to discuss all the different feelings a child might experience with loss.

Sad by Michael Rosen:

Michael Rosen’s book deals with death, but also sadness for all kinds of reasons and why being sad doesn’t always look or feel the same. My two (perhaps a little young) didn’t show much interest in this book, but I think in time it will become very useful for tackling feelings.

Grandad’s Island by Benji Davies:

Bright and chirpy illustrations, this one is a bit subtle. Grandad leaves for an island and even sends a postcard? It’s sweet, but almost too gentle. I don’t think the kids really thought this was about losing someone, more about someone going on holiday.

Heart in a Bottle by Oliver Jeffers:

Perhaps a little bit more abstract for small children (but my two do like it), but then Oliver Jeffers simply knows what he is doing with children’s books. It’s definitely had me in tears. It’s about how losing someone can make you close yourself off to happiness and life experiences.

If All the World Were… by Joseph Coelho:

If All the World were

Illustrations that I love, lots of magic between a girl and her grandfather. “If all the world were memories, the past would be rooms I could visit and in each room would be my granddad”. Lovely.

Rabbityness by Jo Empson:

Rex’s preschool kindly let us borrow this book when my mother-in-law (Sarah, the kids called her Bibi) died suddenly. It’s about how we touch others’ lives and the things we leave behind/teach others and it tells this through paint splattered crazy illustrations.

The Lonely Tree by Nicholas Halliday:

Another one from preschool, as a picture book fan (and snob), I thought this one looked awful. Computer generated images of trees!? Urgh. But it does convey a message of the circle of life and it was useful for us.

Forever by Beatrice Alemagna:

For

A book about how things end, float away or disappear – and it’s beautiful. It doesn’t tackle death directly, but introduces the concept of things going away and it is lovely and funny with tracing paper pages to make things appear and disappear.

Are you Sad, Little Bear by Rachel Rivett:

Audrey found this one in the library (she has a habit of unearthing the right book at the right time!) and it’s a sweet and traditional book about a bear asking questions after his grandmother dies. What is it with woodland creatures and dying stories though? They definitely dominate the market on this subject!

The Invisible String by Parice Karst

Another one we found in the library, this is more about love and being connected whether we are together or apart (good for anxious school starters). The twins in this book do ask if the invisible string can reach their uncle in heaven and this concept could be useful for children to feel a connection to someone who has passed away.

Badger’s Parting Gifts by Susan Varley

Recommended by many, again, I was put off by it’s dated look, but it’s actually very upfront “…dying meant only that he would leave his body behind… his only worry was how his friends would feel when he was gone.” I feel the Memory Tree may have been inspired by this classic.

Always and Forever by Debi Gliori

I am not a fan of her illustrations, so had ignored this one for a while too! It’s another woodland creatures-lose-a-friend-and-recount-stories tale, of which there are a few and if I am honest I would rather chose one of the others over this one!

That’s all I have for now and I hope this collection is useful to someone and I would be happy to hear of any other recommendations – I cannot imagine ever stopping buying children’s picture books, I love them so much!

Telling Audrey she has Down syndrome.

~ Vickywoo ~ Leave a comment

As Down syndrome awareness month (October) is almost upon us, I thought it might be the right time to write about telling Audrey she has Down’s syndrome (-by the way for anyone who doesn’t know, Down’s and Down syndrome are both acceptable ways of writing her condition, the latter being more common in the US).

I have no great insight or advice for anyone wondering when or how to tell their children, but this is our experience…

Sister and brother asleep
My two peas in their pod (Audrey’s bed!)

The fact is, Ted and I really weren’t sure when to tell her or her brother. I kept thinking “Well here I am hashtagging her, sharing, chatting, raising awareness… but I haven’t really made her “aware” she has Down’s syndrome” and that seemed a bit odd. But also: she is at a mainstream school, with friends who are ‘typical’ children and they are all playing together and accepting of each other, pointing out her difference seemed a bit counter-productive.

Then the summer ended and I realised Rex would be at the same school as his sister, alongside lots of older children who may well know that Audrey has DS and what that means… I felt I wouldn’t want either of them to be completely baffled if someone mentioned it.

As a family, we have briefly alluded to it here and there over the years, kids can be hilariously disinterested when you attempt to get deep or explain complex things to them, so we don’t think anything ever sunk in. Generally these discussions would come to explain why Audrey was older than a certain child, but couldn’t walk like them. Because the ‘difference’ noticed has usually been physical, I’ve relied on ‘low muscle tone’ as an explanation.

Little girl does the splits on an arm chair
Flexibility demonstrated

Over the years I have seen children her age or older, with that look that says “What is she on about?” when she’s being silly (over excited usually) or doing something they might consider strange, but at the same time kids generally just accept stuff and move on.

Rex of course has always known Audrey as his big sister, with no expectations of what that might mean (should she be cleverer, faster, stronger or bossier than him? Shouldn’t she be out of night time nappies?). I know that in time, it’s likely he will start to feel like the older sibling, he will notice the differences between Audrey and her peers, but currently, it’s not something that needs highlighting. It’s a truly wonderful time for them to be siblings, with no “difference” being highlighted or acknowledged. But, that said, subtle differences are already creeping in. He knows he’s faster at running. He knows he can climb when she can’t. He may have thought it strange he nailed pooing on the toilet before she did. So the time came that we needed to tell them both that Audrey has Down’s syndrome…

We took an opportunity when running was being discussed again and said, “Well, Audrey has something called Down’s syndrome that makes it a bit harder for to run as fast as you, but she’s very flexible and good at yoga because of it”. We repeated this again a couple of days later and got the classic kid response “I know, you already told me”.  But shortly after I heard Rex telling Audrey “You have Down’s syndrome Audrey, so you can’t run fast” and then Audrey replying “It means I’m super flexible!”. And that was that.

At present, with Rex just starting reception, it’s a short window whilst she knows more letters and words than he does, that she can read books and write sentences… but I can see it won’t be long until he’s caught up with her. I hope that we can always instil that sense that although Down’s syndrome brings challenges, there are positives to her condition. She wouldn’t be the child she is without it and we wouldn’t want her to be anyone else.

A Glass Half Full Decade

~ Vickywoo ~ 2 Comments

I took some snaps of Audrey one morning before school, she was beaming in full uniform and a little rucksack on her back. Rex and I dropped her at school and returned home to wait for Bibi (Grandma) to come. Rex was watching back-to-back Paw Patrol whilst I emptied the dishwasher and tidied the kitchen as best I could in the 20-30 minutes I would usually have before my mother-in-law Sarah arrived to watch Rex whilst I went to work in a cafe for 3-4 hours.

Ten minutes late was not unusual. I felt relief to be quite organised and ready for Sarah’s arrival. Twenty minutes late was unusual. But calling people when they are late and might be driving could add to their stress, so I didn’t do anything for a bit. I’m not sure what the order was particularly, but I know I called her mobile and home, twice. I sent a message via What’s app and a text. I messaged a friend to see if they had heard she wasn’t coming.

When she was around 30-40 minutes late I was definitely panicked, but I didn’t want to worry my husband Ted, so I called my brother and asked him what I should do.

I’ve relived the events of this particular morning in October more than I would care to. Recounting the details to shocked friends, watching their eyes widen when I say “she just didn’t turn up”. The fear that one day, someone might suddenly not be there. Well on that day, Sarah was no longer there. Ted and I have no parents, the children have no grandparents (well, one great grandparent – my 100 year old nan!).

When I recount the deaths of my father, Ted’s father, my sister, my auntie, my mother and now my mother-in-law… well I do feel like people may view me as the grim reaper. Our little (evidently getting smaller by the year) family is a happy one though. We feel so grateful to have each other and many wonderful friends to get us through these times, but, there has been a lot of death around us.

It’s now 2020. People are summarising their decade with weddings and travels and new jobs. I can see mine in two ways:

On the one hand, 2010: the year my father died. 2011: the year Ted’s father died. 2012: the year my sister died. 2013: the year we had a disabled child. 2014: the year I was made redundant and had a miscarriage. 2015: Audrey started therapy to learn to walk. 2016: the year we had Rex and learnt what exhaustion really means. 2017: the year I was made redundant again, the year my mother died. 2018: my brother was undergoing treatment for cancer, I was in therapy. 2019: the year Ted’s mum died.

Or I could look at it like this…

2010: I ran my first 5K.

2011: Ted and I got engaged.

2012: Ted and I got married and had an amazing honeymoon in New York.

2013: Ted ran a marathon. We had a beautiful baby girl!

2014: I started a new job.

2015: I got pregnant with Rex. We moved from a flat to a house.

2016: We had another beautiful baby! Audrey learned to walk (and so did Rex at 10 months)!

2017: I spoke to trainee midwives for the Down Syndrome Association’s ‘Tell It Right’ campaign. I met some significant new friends.

2018: Audrey became a model and started mainstream school, I started freelance writing.

2019: Audrey became a TV star. I got a new job working for a charity I care about. My Nan turned 100 years old.

We have definitely experienced more than our fair share of death, but we’ve had our fare share of good fortune too. We hope that 2020 sees us find a new home and that everyone we know and love remain in good health.

Belated Happy New Year!

 

 

Down’s syndrome Awareness Month 2019

~ Vickywoo ~ Leave a comment

Whenever the Down’s syndrome awareness days/months/campaigns come around I generally feel like I’m banging on about the same old stuff, it’s all been said before and people are wondering why I’m still doing this.

I will never tire of writing about how great Audrey is and that’s a fact. Beyond that, when I try to think what the Down’s syndrome community wants to achieve with awareness campaigns, I remember why it’s important to keep banging the drum. Because surprisingly not everyone knows that people with Down’s syndrome can live a full and happy life. That they can achieve and learn and contribute to society. We may be very early in our journey (Audrey is only 6), but she is continually learning, progressing and she is full to the brim with love and kindness. She is an asset to our family, not a burden.

9 out of 10 women in the UK who receive a prenatal diagnosis of Down’s syndrome choose to abort. Would the stats skew so high if perceptions of Down’s syndrome and disability were changed?

We are (supposedly) living in a liberal and inclusive world, yet I continue to encounter those who fear disability or don’t fully understand it. Hey, I’m not perfect and I’m learning on the job, but I’ve had some uncomfortable conversations with people, even though they are aware I am the mother of a child with “special needs”:

A mother I know once chatted to me about her 10 year old daughter’s friend who is autistic; “She wants her to come for a play date and I’ve said no and I don’t know how to explain to her that we don’t know how she might react to certain things…”. I would absolutely hate to think a parent might not have Audrey for a play date through fear of her condition, I would much rather they suggested a play with me there (to see how things go) or asked me directly if she might be able to come for a play and if so, if there is anything they might need to know. In any case, a mother of a child with extra needs wouldn’t just pack them off for a play date without knowing that they will be ok. If anything, I tend to be overly protective about Audrey and her abilities, she often surprises me with what she can do independently. I wish I had said all this at the time, but I was so stunned that she was telling me this, I didn’t say anything!

Another example from a couple of years ago, I had a chat with a dad about about how fab CBeebies is at inclusion and he really didn’t get my stance, his response was along the lines of (eye rolling): “Yeah they’ll always get an ethnic kid in a wheelchair in there”, it felt very much like “the world’s gone PC mad!”. Again I wish I hadn’t stayed silent. Because every time you eye roll at a disabled child/same sex parents/family of colour shown on TV, remember that those of us represented by that “shoe-horned difference” are not eye rolling, we’ve got a fuzzy feeling inside. We get to feel like we matter enough to be included with all the “typical” families. People will start to realise that disabled people live in the real world too, with families, jobs and hobbies just like everyone else.

I am absolutely thrilled to say that Audrey is going to be in a TV advertisement over Christmas on Channel 4. I’m not even sure that the team behind it know how much it means to us and the Down’s syndrome community that she was chosen. In it, she’s a little girl opening a Christmas present. She just happens to have Down’s syndrome. And when I’m hanging around with her in a big house in London watching her being filmed it’s just another crazy thing Audrey has gotten me into! Audrey having Down’s syndrome has opened doors, not closed them!

I’ll be posting on Instagram (as usual) for Down’s syndrome awareness month. I am no expert on Down’s syndrome (medical stuff, facts about how the condition affects each person – I’ve read minimal amounts to be honest), but I’m an expert on my kid. If you’re looking for a poster girl to explain how Down’s syndrome can make you adorable, kind, thoughtful, stroppy, stubborn, loud, quiet, easy-going, challenging, clever… well Audrey is the one! If there’s one thing I’d want people to remember about Audrey or anyone with a disability; it’s quite simply that they are human. She deserves love and a chance to thrive just as much as anyone else.

 

Poster girl

~ Vickywoo ~ Leave a comment

Part of sharing positive moments of our life is to ensure there is a balance to what people see when it comes to life with a child with Down’s syndrome. When society tells you to “screen” for Down’s syndrome and you love someone born with DS, you want to share your experience of that love to show it’s not a negative thing that needs eradicating.

It’s because of this that sometimes when life isn’t rosy and Audrey is being a pain in public, I feel huge pressure for her to be good. I want to prove people wrong, I want to show them our life is full of fun and happiness. That said, I’m also honest, so I aim to talk about and share the tough stuff too. Unfortunately life with kids is not entirely straight-forward.

Yesterday, I wanted to go for a run, so Ted did the bedtime stories. Rex was feeling particularly clingy and as I got ready to leave the house he was crying and screaming my name, Audrey however was perfectly calm and happy, “Goodbye Mummy!” she said cheerily as she settled into her bed. Meanwhile Rex was at the kiddy gate rattling it and turning red in the face. Yet he is my “typical” child and she has “special needs”!

The day before, at the park, we arrived at our car to return home. Stood just a couple of metres away from the car door Audrey refused to walk across the long grass. Rex was calmly standing by the car, waiting to get in. Audrey was refusing to move. I was negotiating (begging), but to no avail. As I made the decision to pick her up and force her into the car, a pregnant woman walked by. I kept my head down, got the kids in the car and got ready to leave, but really I wanted to turn to her and say “She’s normally lovely!”.

The fact is, I am always nervous around pregnant women when Audrey is with me. Suddenly she is the poster girl for Down’s syndrome. She is the sole representative – a make or break impression for someone making a decision about screening and termination.

It’s not just the “bad” behaviour that concerns me, sometimes when she is quiet or seemingly not engaged, I worry about people thinking she has nothing going on in her brain. I worry they will be judging her on conversational responses (or lack of) and think she is stupid. Yet if Rex was suddenly mute at a stranger’s question, I would dismiss him as shy and move on, I wouldn’t expect him to be judged solely on that interaction.

It would be nice to say we have nothing to “prove”. She is a multifaceted human being who can be happy and sad, easy-going and stubborn, good and naughty – but sometimes the perceptions of people with Down’s syndrome put them in a box of one or the other. They are either considered to be loving, cuddly and amenable… or unpredictable, hard to control and challenging – it’s rare to think of them as having the ability to be all those things and more. Or none of those things!

What we forget when we group people together (as if they were a different species to us) – is that within the similarities there are also many differences. And stereotypes sometimes fit, but sometimes don’t. Just as not every red head is feisty and not every American is loud – people with Down’s syndrome have stuff in common, but they are individual humans.

Audrey is more polite than your average kid. She’s better at sharing than any other kid I’ve met. She’s chatty and confident, she likes to laugh but she doesn’t like to see people get covered in gunge! She works really hard at physical challenges, but can sometimes lack confidence in that area. She’s a great eater, sits at the table like a dream but can be stubborn and wants to be fed by us sometimes! She doesn’t like lots of bubbles in her bath. She settles down at bedtime to sleep very happily.

And I can tell you about her “typical” brother Rex, he isn’t great at sharing, but is excellent at climbing and running. He can be shy, but once he warms up he’s great at making friends. He’s an extremely fussy eater and likes to eat with his fingers, whilst on the move. He doesn’t mind bubbles in the bath, but will help get rid of them for Audrey. He rarely wants to go to sleep at bedtime, he wants to keep playing… they both have my long eyelashes (which I got from my mother) and they both seem to have inherited my mother’s ability to chat!

The two of them have given me a very varied experience of motherhood just by being different kids with different personalities and the fact is, at this stage, Audrey’s Down’s syndrome plays a pretty small part in what makes her different to her brother.

Those of us with children who have Down’s syndrome may feel the pressure to be the model example of how it can all be ok, but we should also be allowed to show it’s not always ok – because that’s life with any child.

 

 

We Have a Runner!

~ Vickywoo

One minute you’re willing your disabled child to learn to walk, then you’re willing them to have the energy to walk to school… the next thing you know they are running off in random directions and you can’t keep up!

My beloved good girl Audrey has discovered the fabulous feeling of freedom. Of running off alone, ignoring pleas, shouts, begs, stern-voice nos… she just keeps going.

I am fully aware that this is a common trait for children with Down’s syndrome (running off). I’ve met many a parent explaining their need for reigns/buggy straps/confined spaces for safety and throughout this I’ve been able to say, “Hmm, Audrey doesn’t really do that”. However she spends a lot of time at school now and not much time outside in open spaces with just me in charge, so maybe there hasn’t been much of an opportunity for the running? Well, she is taking the opportunity now!

This school holiday has barely started and the running off is becoming an issue. There are several reasons this phase is really hitting me hard:

  1. My lack of authority is now obvious. Both children do not seem to respond to me saying no. It’s incredibly frustrating when you try to discipline your children and they either ignore you or find your stern voice hilarious. Everything feels like it is escalating to crazy threats “No more television, ever!” or that a rage builds up and I’m growling at them and dragging them by the arm. Hideous.
  2. Her special needs are now obvious. I’m definitely upset by this “special needs” trait popping up. I hate the thought of anyone seeing me run after her (shouting her name as she ignores me), thinking “That poor woman, life must be so hard with that disabled child”. I just want people to remember that any snippet you might see of anyone’s life is just that – a snippet. So yes, she is being a challenge at the moment out and about, but on that same day she also approached a crying child to check they were ok, she also sat happily and ate her ice cream whilst her typical brother ran riot in the cafe. She also settled at bedtime stroking my face telling me I’m a good girl.
  3. My ability to parent two children feels questionable. This one gets me. If I can’t take my two children out and about without having to chase after one of them, potentially abandoning the other one, then how an earth am I allowed to be their parent? It creates anxiety around every activity I plan and I’m constantly wondering how on earth other mums cope (with two or more moving children)?

Audrey and I have discussed the running off that happened (a lot) yesterday. She has said she is sorry and she knows she needs to do good listening and stay near her mummy. We’ll work on it, but I know it’s going to be hard. It feels like she is changing and I’m struggling with that. I always describe her as a child who like to play by the rules, which remains true in some respects (shoes off indoors, wearing a school uniform), but also she kind of makes up her own rules!

 

A Strong Reception

~ Vickywoo ~ 1 Comment

As the summer holidays are in sight and Audrey is 6 (today!) I thought it might be a good time to write about Audrey’s life at mainstream school so far, because here we are, nearly finished with her first year in reception!

I mysteriously didn’t write (even a little) blog post about Audrey turning 5 (I checked back), but here we are welcoming the big 6 at the end of her first year of mainstream primary school and we have a summer break of (hopefully) fun times ahead.

By now I am sure you know I am so proud of my beautiful, clever, friendly little girl. We have come so far since that hot July day in 2013, when she was presented to me and all I saw was Down’s syndrome. What felt like a cruel blow now feels like the best thing that ever happened to us! We’ve had a fun and exhausting weekend celebrating her birthday, she got a doll’s house, her first “Ken” doll (she has mountains of female dolls) and as always, Audrey gave us amazing feedback saying “This is my best present ever” when she saw the dolls house and eagerly introducing Ken to “her girls” (the other dolls).

So I dropped my 6 year old off at school this morning and now I can share with you my thoughts on how things have gone for us, having a child with special needs attending a mainstream setting.

I had many fears about her starting school (even with a deferral making her one of the eldest, rather than youngest in the class), but I also knew that there was a big chance Audrey would thrive in the setting. All the adults that “worked with her” (key person at nursery, therapists, inclusion service etc) would say what a sociable, outgoing child she is and that she’d have no trouble making friends and that reception was all about making friends.

My main worries were “she’ll get crushed to death” – she is small and her low muscle-tone makes it harder for her to navigate obstacles/stay on her feet when getting knocked around. I also wondered if the whole environment might just be too loud and full-on for her.

As I am slowly learning, she is often more resilient than I expect her to be.

She did indeed get knocked about a fair bit at the beginning of school. Things you couldn’t anticipate (tripping on a trolley, getting hit by a rogue ball in the playground) will simply happen in a busy school environment. It is heart-stopping to get the call that your child has had a bump to the head, but she’s survived and I think everyone is aware now that she’s a bit more fragile than some of the other kids.

We had a parents’ evening at the beginning of school and it was so uplifting. We had fantastic feedback about her settling in, making friends, being part of the class and her positive attitude (she arrives every morning saying “Good morning guys!”). Our second parents’ evening was much the same, aside from one tiny comment about how Audrey wouldn’t be reaching her Early Learning Goals. It’s not like I expected her to be performing at the top of the class of typical children, it’s just that I had forgotten that she wasn’t on the same level, I had forgotten because we are so often focused on all that she can do. You can sort of put yourself in a protective bubble, where you look at your child through rose-tinted glasses because they, to you, are perfect. This was just a reminder that our child, measured against “typical” standards is “delayed”.

Put academic measurements aside, look at the bigger picture and you’ll see Audrey attending mainstream school has been a success. She’s made brand-new friends, she’s learned how to write her name (just about), she can sound out and read all kinds of words and she can tell me details about her day. She has progressed physically and mentally just from interacting and learning alongside her typical peers.

Audrey has school lunches – this may have contributed to an improvement in her eating at home too, as she now eats lots of vegetables and is happy trying new things. She always tells me what she’s had for lunch (macaroni cheese and fish and chips are her favourites!) and explained recently that the children line up for a “squirt” before lunch; yes, I was confused at first, but when she mimed it out I realised she meant hand sanitiser! It’s tiny details like this that really show how far she has come with her communication.

The thing is, I can put myself in the position of a parent of a typical child starting reception… you learn there is a child in the class with “special needs”; they need a 1:1. Being brutally honest I do think it would have raised concerns for me. I would wonder: “Will their behaviour be challenging?”, “Will their needs affect the class as a whole?”. So I was also nervous of the the other parents and their attitudes. I wanted to be able to tell them all that they would soon see what an asset she is.

I’m hoping it didn’t take long for people to see that. Audrey’s presence in the class is not a drain on resources. It’s not a waste of time for her to be there learning with her typical peers – it’s a success story and a positive experience for all concerned. She learns through copying, so typical children propel her education and she provides them an insight into disability. She has her challenges and I’m sure sometimes the other kids wonder what on earth she’s on about(!), but also they’ll see she is kind and thoughtful and likes lots of the same stuff they do. I also like to think her 1:1s are an asset to the class because, yes, they are there specifically for her, but they will no doubt help other children when needed.

Everyone has been welcoming and Audrey has made some great friends. We’ve had birthday parties and play-dates a plenty. She’s been on school trips to the local library to see a puppet show, to the zoo, she took part in sports day, harvest festival at the church and she performed in the nativity as an angel. Audrey was recently chosen to be “Star of the Week” (along with other children), getting a certificate and a little box allowing her to take something into school for “show and tell”. My heart is filled to the brim with pride that she is taking part in all these school activities.

She does get very tired at school, she can exclaim “Not again!?” when I tell her it’s another school day, but mostly she bounds into school full of enthusiasm and bounds out ready to tell me she had so much fun.

I know that sending your child off to school can be nerve-wracking for anyone – suddenly your child is spending a lot of time with people you don’t know very well. But it didn’t take long for her to be well-known throughout the school and I have no doubt that Audrey will have many happy years at this school.

And so on to Audrey’s second year of primary school (confusingly; year one). She enters with a knowledge of the school routine, a good group of friends and her can-do attitude! But for now, a bit of summer time fun and a break from the school routine… a welcome break but also a terrifying stretch of days ahead entertaining my two active children… wish me luck!

Attention!

~ Vickywoo ~ Leave a comment

Accidentally updated this post thinking it was a draft from 2019, turns out it was published (and now republished!).

I’ve made no secret of the fact that when Audrey was born, the little face that popped out looked “different” and my brain flooded with negative thoughts.

Would people want to spend time with us? I assumed not. Would they whisper about us? Stare? Strangely I imagined her finding it hard to make friends. In fact, I thought everything would be hard for Audrey and for me.

In reality, she was a baby. A baby with a tube on her face, yes. A baby with an obvious “condition”, but she could still enjoy a coffee shop visit and baby group like any other baby. I had definitely underestimated humans in general, but I had an awesome NCT crew who were always there for me and were not phased in the slightest by Audrey having Down’s syndrome.

Inside I was still constantly surprised by how welcomed we were at baby groups, how it was never a big deal. I emailed ahead to book for baby massage, with a hard lump in my throat I would type “my daughter has Down’s syndrome and is on oxygen” and the reply was warm and… normal. The teacher confirmed my place and in fact I can remember her words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.

In the time that Audrey and I spent at music groups and play groups, she was always welcome and more often than not I would be tearful not because it’s all going wrong/people are being cruel, it was because I was emotional about the fact that she was “fitting in”. When I went to a choir for parents (where the grown ups sing pop songs and all sorts while the kids just play), Audrey would often stand at the front and mimic the teacher, where the other kids had absolutely no interest in what the grown ups were singing, Audrey wanted to be involved and she wanted to conduct the choir!

Of course, we’ve had some incidents, but it was less-so staring/nudging/whispering, more straight forward “My friend had one of those, couldn’t talk” or “What’s with the tube on her face?” – the bluntness was laughable. And of course she was (still is) small for her age, so you get a sympathetic head tilt or the question “Was she prem (premature)?” when discussing her age. She wasn’t premature (she was a few days late actually), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes, she was premature!

Once she was off oxygen, sitting up and joining in, quite simply the staring, the whispering, the attention: it was all there but not in the way I had dreaded. Audrey was (is!) a superstar. People are drawn to her because she is cute, friendly and funny. She was often a very enthusiastic participant in music groups, clapping, singing, head shaking. She would say hello to anyone, asks people’s names, approach children/babies if they are crying to see if they are ok. I’m more surprised now if people don’t stare, if they’re not interested in her, because she is interesting!

Once she started school, we found a whole new audience. In reception, if we were early and waiting for the gate to open, I would see the nudges… older girls looking at her like a living doll, – they would look like walking heart eye emojis gazing at Audrey. People shouting “Hello Audrey!” when we are out and about and she regularly got presents/pictures/notes in her school bag from her friends at school. She would march into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she would bounce out each afternoon and throw her arms around me. She is exceeding those low expectations I had of her in those early days (based on an outdated view), everyday.

I know that our experience doesn’t cover everyone else’s – we are lucky in that her needs are not as complex as some, but we’ve had our moments. We’ve had to leave noisy parties and take time outs from events – sometimes I’ve felt uncomfortable in those situations, I’ve felt stared at. Just recently she wouldn’t hold my hand in town and I was gripping her by the wrist as she pulled away and got angry with me, I felt very much like the mother of a special needs child, gaining sympathetic eyes or even those stares that seem to say “I could never handle a child like that”. But those occasions are rare and the upside of the whole experience of having a child who is different is the immense joy we take in the little things she excels at and achieves.

I never knew that Audrey would have this quality that makes me want to show her off to as many people as possible. I never expected to feel like I was accompanying a celebrity to the park. Of course now, she is a (albeit low level) celeb as we’ve appeared on the CBeebies show, Our Family. Which has meant a few people have asked if she is in fact the Audrey off CBeebies and I love that typical kids will have watched her and enjoyed her episodes, without a thought given to her being “different” or weird. She’s just another kid featured in Our Family doing fun things.

Audrey is turning nine very soon and I having said she still gets attention, I have noticed that it has quietened down as she’s gotten older. She is less of a living doll now she’s a bit bigger. My thoughts have certainly started to turn to when she’s expected to be independent, but she won’t be.