Awareness

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.

Dancing Queen

~ Vickywoo ~ Leave a comment

I’ve just had an extremely stressful (but fun) weekend and I definitely need to pour it out here on my neglected blog. I can usually write whatever it is I want to get off my chest/share with the world via an Instagram post, but this weekend was a biggie, so here I am.

Let’s start with a brief note on Audrey’s dance history. At an early age (like many babies/toddlers), Audrey showed that she enjoyed music and moving to music. We went to all the usual music groups, as well as some a bit more different (me singing in a grown up choir whilst Audrey rolled around) and we listened to music at home, watched music channels, learned sing and sign with Singing Hands and had a boogie on the regular.

Once Audrey was nearly five I started looking for dance classes for her. She trialed ballet with Rex (he was two and just ran around), but I knew what would really make her come alive and it wasn’t ballet. So I found a street dance class for her and she loved it. Sadly, when we joined we knew the teacher running it was no longer continuing, so it was only for a few months, but it gave Audrey (and me) a lot of joy. She danced to George Ezra and Katy Perry, she learned little routines but it was mostly just good fun moving.

When that ended I got on a waiting list for a dance class (which never came to anything) and scoped around looking for another fit. Obviously Covid paused a lot of options, but at the end of 2020, I found a modern dance class for her that some of her classmates were also going to be attending. She liked it and she stuck with it (all the other girls from her class decided not to continue) and over a year since classes could take place, she has just performed in her first show.

The build up to this dance show has been a rocky road. Audrey started leaving the class (I wait in the building in a side room for her), coming to me for a cuddle, sometimes in tears. She was also rehearsing songs and dances at school and she said she didn’t want to do the dance show because: “too many shows!!”. I think of her as quite a happy girl who doesn’t stress or overthink things, but for this, she was feeling stressed. Every week she was saying she didn’t want to do the show, which was such a shame after all this time learning the routine.

We were concerned and confused about what to do as there is a fine line between “you’ve committed to this dance and we believe you can do it” and “it’s ok, you don’t have to do anything you don’t want to”. After seeing Audrey perform at her school show, I felt confident that she could handle her modern dance show too. She was just finding the repetition of the routine hard and also maybe a bit scared of the unknown – she had never been to the theatre booked for the event.

One day I had a revelation – Audrey was talking a lot about her best friend who had performed with the school at the Dome in Brighton. Her friend had showed her the routine and performed it at school, Audrey had loved supporting her. So I suggested that maybe Audrey would feel better if her friend came to watch? And it worked! Audrey was very excited by the idea. She said she would do the show.

And so we ploughed on, through some wobbles, but constantly reminding her that her friend would be there to cheer her on and we would all go for burger and chips after!

Show day came yesterday (the day after her school Summer Fair but that’s another outpouring of thoughts I’ll get to!). At 9am I took Audrey, Rex and his friend (the boys were performing tap in the show) to the theatre for the dress rehearsal morning. Chaperones were provided, but given Audrey’s nerves, we decided it made sense for me to be backstage with her. Again, I was initially torn between giving her the space and independence versus being there to give her support. My instinct was that she would need me, but sometimes I wonder how she would get on without always being micro managed.

Show day backstage

The thing is, I stress about Audrey with good cause – she needs reminding to drink water and reminding to go to the toilet. She’s on medicine for constipation and we are trying to get her dry at night, so these things to genuinely affect her mood and her routine. At the rehearsal, we initially sat in the room with the boys and their chaperone by mistake, but when we realised we were with the 44 other girls down the corridor, I had no worries about leaving six year old typical Rex to his own devices.

Audrey and I sat in the corridor as the main dressing room was simply too hectic. I had downloaded some shows on my tablet and in hindsight, I should have brought headphones as that many children together generates a lot of noise. She was doing ok though, she was in the Netflix zone (and not willing to let any other children see, she huddled close to that tablet!).

As part of the dress rehearsal we all went to wait in the wings as another dance finished. The girls in Audrey’s troupe were excited and nervous – talking about how dark it was and a bit scary! It was not helping Audrey. She was cuddling me, telling me she couldn’t do it. One girl from her school in the year below was particularly kind and helpful, she gave her a little pep talk (no doubt repeated from her parents) about how the audience was only going to be friends and family – no strangers, so not scary!

They did two run throughs of the dance and I felt a sense of relief that Audrey made it on stage and remembered the routine. Phew. After that, it was a bit more waiting around whilst Rex rehearsed tap and then we all went home for a three hour lunch break.

At 3.30pm we were back at the theatre. Along with the circa 50 little ones performing, there were now several groups of older girls milling about and the volume of chat, scream and excitement was now extreme. I was finding it all a bit overwhelming, so I knew it was hard for Audrey. She was dressed in her costume and cuddling me, saying she just wanted to get on stage, but we had over an hour to wait. After a while, we moved into the room with the boys which was still a bit noisy and chaotic, but a sanctuary in comparison to the main dressing rooms. At this point, Audrey started to get nervous again, she was tearful and told me she couldn’t do it. I hated leaving her, but I needed to take my seat in the theatre and having spoken to the dance teacher, I felt like giving her space was the right thing to do. I asked Rex if he could remind his sister she could do it (I’ve no idea if he needed to do this) and I left Audrey as she weakly gave me a little thumbs up and a forced smile.

I found Ted and Audrey’s friend ready and seated and explained that I had left her still feeling nervous. We were all worried she might not get on stage. Which was actually why it was an extra special moment, when the girls in her modern group came running on stage and Audrey was just a few seconds behind, enough to give us the fear, oh no, she’s not going to do it and then… boom! she appeared! Hurrah! Of course I was in tears through the whole dance. She looked like she was having the best time and she remembered her routine. She even shielded her eyes at one point to try and see us in the audience. It was spectacular… And this was followed by her brother Rex in his tap routine – which was quite simply adorable, so I continued to cry. He was completely unphased by the whole thing and just got on with it. I could not be more proud of them both.

Early that day there was a moment backstage where I was cuddling Audrey and she was saying it was all “too loud” and I was kicking myself for not remembering her ear defenders, that I felt envious of all the parents of the typical children. They’ve dropped them off, they’ve gone home. Done. There were reception children happily hanging about in the chaos. But my child is struggling and I’m stressed. It felt unfair. I felt like I was carrying a very heavy weight and I wasn’t sure I was up for the job. But seeing Audrey up there, performing alongside her typical peers was magical. It made it all worth it. The tears, the headache, the effort, it was worth it. Because she was given the opportunity, she wasn’t told “sorry we can’t cater for a child with Down’s syndrome”, she was included and we had a bumpy road to get there but she did it!

Walking to McDonald’s after the show

All I need now is a lie down in a darkened room for a week and I’ll be right back on track.

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.

World Down Syndrome Day 2020

~ Vickywoo ~ Leave a comment

Nothing is currently as expected.

Today we would have been attending a party with other local families who have someone in their life with Down syndrome. Just a couple of weeks ago, I thought we’d carry on as normal… but the Coronavirus has stepped up and moved on and now the schools in the UK are closed, everyone (who can) is on work from home mode and all parties and gatherings have been cancelled.

To say the times we are living now are bizarre is an understatement.

Audrey has an educational health and care plan, which does actually mean she could continue to attend school, however, since her brother Rex’s preschool is closed and Ted and I are able to work from home, we would much rather have her with us.

And so here we are, “social distancing” is our current mode. Staying at home, perhaps popping out for some fresh air, but avoiding group meet-ups and physical contact where we can. We hope to Face-time and stay in touch with friends and family as best we can. We hope Rex won’t climb the walls (and us) too much.

The biggest stress for me by far (yes, above the thought of catching the virus) has been the pressure (social media, friends chats etc) focused on homeschooling and activities. Everyone is being extremely helpful sending links, resources, accounts to follow, apps to download, things to print… I cannot fault people for trying to ensure we can all help our kids learn, but what it results in is a seemingly mountain high pile of stuff you feel you have to do. I am overwhelmed by the thought of doing my actual job (communications for a charity), doing my mum job (entertainment, food, referee, wiping bums etc) and now being their teacher! It feels like too much to handle on top of the fact that all four of us will be at home together for months. Even if we get to escape the house for fresh air it will be short lived and it won’t really be with other people. Intense!

There is a funny part of me that thinks “you wished for this”! Because often in the mornings, during the stressful period of “Put your shoes on, Where is your book bag? Don’t take your coat off! Please can we get in the car now?”, I find myself wishing we didn’t have to do that morning routine 5 days a week.  Now of course I am desperately sad that I don’t know when we’ll do that routine again.

Anyway, bringing it back to today… World Down Syndrome Day raises awareness (and funds) for various charities relating to DS, there will still be a lot of online campaigns and videos. The central campaign involves “lots of socks” which I (and many others) actually don’t like! It gets confused with odd socks (for anti-bullying) and muddies the water to “we are all different” when we are often striving for people to understand that having DS doesn’t make you so different to typical people.

I mentioned in my Instagram feed this week that I actually learned something about Down’s syndrome this week thanks to COVID-19: I have pretty much consistently told people throughout Audrey’s life that “people with DS have a weak immune system” , but once this all kicked off I decided to fact check. Actually, it’s just that people with DS are prone to certain conditions (relating to their heart or lungs) and it’s those underlying health issues that can cause compromised immunity. So basically, Audrey is fine because she has no health issues. Plus (major plus), she has my immunity passed on from breastfeeding, yay!

 

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.

World Down’s Syndrome Day 2019

~ Vickywoo ~ 1 Comment

It’s been a year since my list published on Mother of All Lists and reached a new audience with “our story” for World Down’s Syndrome Day. We’ve also been featured in magazines Best and Take A Break, on blogs like Mental Mutha and Gas & Air. Basically that’s an aim for me – not only to reach someone who needs us (a new mother to a child with Down’s syndrome or someone with a prenatal diagnosis), but also to find those who have no knowledge or connection to Down’s syndrome. To open their eyes and make them think. For them to see that Audrey is a human being with a right to live her life to the fullest.

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You see, on World Down’s Syndrome Day I often feel overwhelmed by the content. Videos, articles, stories, clips, blogs – all devoted to raising awareness of Down’s syndrome. The community is trying to make people aware that this is not a condition we need to eradicate, but it is something we need to learn more about and one we can celebrate not mourn.

I know that we are incredibly lucky with Audrey and her abilities. I also know that had we sat her down in a corner and ignored her (true description from a mother of how her baby with Down’s syndrome was treated at a nursery in the 1960s), she would not be doing so well. She thrives with love, care and attention and with a place in the world among her typical peers and her family.

It pains me to think that someone might receive a prenatal diagnosis of Down’s syndrome, be at a crossroads as to what to do and decide to terminate based on dated information, lack of support or because they aren’t given any other option. Medical professionals and organisations that are there to assist with a prenatal diagnosis can be surprisingly callous or biased when offering up ‘options’, imagine receiving the news that your unborn child has Down’s syndrome and immediately being asked “When would you like to book in your termination?”. I’ve heard stories of women being continually asked “Are you sure you want to continue with this pregnancy?” after they have made their position very clear.

Just to explain for anyone who doesn’t know – babies prenatally diagnosed with Down’s syndrome can be terminated up to TERM. Because the UK Abortion Act 1967, states that there “is no time limit on the term of the pregnancies” when there “is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” “Seriously handicapped” is then not further defined, so this loose term can allow mothers to terminate based on a cleft palate or a missing arm – if you can argue a child will “suffer” due to a disability, you can abort on your due date if you choose to.

I write this from a perspective of someone who believes in a woman’s right to choose – I believe in a woman’s right to have control over her own body and her pregnancy. But also as someone who thinks that it is madness to control the lives that enter this world based on how “perfect” or “imperfect” they might be. Especially when we don’t know how to measure that. What on earth is perfection anyway?

Well I had no idea what true perfection meant until Audrey entered my life.

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Happy World Down’s Syndrome Day 2019!