Down’s Syndrome

The Favourite

~ Vickywoo ~ Leave a comment

One morning, as I laid in bed, with both of my children snuggled either side of me… Rex (who is eight), asked “Who is your favourite child?”. Of course I tried to side step and make light of this one by asking “Out of all the children in the world??”, but unfortunately he clarified “No, out of me and Audrey!”. And then they proceeded to push and pull saying “Me! It’s Me!”.

Naturally, I told them they are both my favourites and they were left unsatisfied.

But it sparked some thoughts. Because when Audrey was born, I guess I thought she could never be the favourite. She would always be the disabled child, making her somehow “less”. I do not type this lightly, I like to be raw and honest, and I remember, even after ‘accepting’ she had Down’s Syndrome and loving her, I still had that yearning to have a “normal child”. I don’t think I thought I’d be complete as a mother or that our family would be complete unless I made a “normal” child and raised it. The first time this feeling was banished was when we lost our second pregnancy (at a thankfully very early ten weeks). It was at that moment, where we had a scan and it was confirmed that we were no longer pregnant, that I gazed upon my eighteen month old (what were we thinking?!) beautiful Audrey, and I felt so incredibly grateful for her. I felt blessed and happy and realised that I no longer needed that “normal kid” and that if were unable to produce another child, well that was ok because Audrey was enough.

And let me just say, Audrey was a bit of a dreamy child at that age. She was as cute as can be, chatty, outgoing and as she could only bum shuffle, she didn’t run off anywhere and she was often perfectly content eating blueberries whilst I had a nice coffee somewhere. She napped in the cot at home so I could get stuff done or have a rest, she truly made me feel like I was bossing this whole mum malarkey.

And so, having proved herself to be an absolute angel and make me realise I was being a right dick for wishing for that “normal child”, she was not only my absolute favourite kid in the world, she had completed our family. But of course, she actually hadn’t… because we were lucky enough to get pregnant again and have that pregnancy result in Audrey’s baby brother, Rex. Rex arrived when Audrey was two and half, she was still not walking, still in nappies.

My expectations of the baby sleeping and Audrey and I continuing to live our lives (music groups, coffee dates, chill time), came crashing down around my ears when Rex turned out to be a bit of an unsettled baby who like to sleep on my body and hated the buggy (unless it was moving). So Audrey kept her prime spot as the favourite and Rex remained a blessing, but one that had me thinking regularly “I can’t do this” and “Why did we do this again so soon?”.

It was a very different experience to be the mother of Rex pre-two. He managed to make me feel like I was definitely not bossing the mum thing and I abandoned all ideas of more babies, having previously hoped for four children. But it wasn’t all doom and gloom and the two of them together unlocked a new level of love and magical moments.

At eight and ten, they are both a challenge at times, but sooo much easier than those early days and so much fun. Rex has become such a curious, clever little boy and Audrey surprises me with her knowledge every day.

Ted and I have often joked that Audrey is our favourite, (I think your first born always has a special place in your heart), but the fact is, they are both so flipping fantastic in their own different ways, it is impossible to choose!

Camp Bestival!

~ Vickywoo ~ Leave a comment

We went to our went first (staying overnight) family festival in 2019: Camp Bestival. Not being a camper or even much of a festival goer, it was a big leap for me. Audrey was in the Camp Bestival campaign for 2019, which meant we could attend at a discounted rate and it forced me into trying festival life!

We rented a camper van because camping is just not for me. Then I panicked about driving this huge camper van and roped my lovely friend into joining us and driving us.

I wrote a bit about our experience in 2019 (when Audrey was six and Rex was three), but never published it. So now I can tell you about then and now (summer 2022)…

There are no doubt lots of fun people writing about festivals with kids, but as your sensible unlikely festival goer, this is a tame take things!

2019… well, there were times when I was really stressed. There were times when I was tired and grumpy. But it was also oh so magical and some serious family core memories were locked in. I am known to be “indoorsy” (this is the opposite of the better known “outdoorsy”). I am someone that likes a sofa, films, a nice cup of tea, a hot shower, shade, warm clothes, access to a toilet, dry things. I don’t like; being in outside on a hot day in direct sunlight, bugs, dirt, grass, rain, mud, being wet, queuing for toilets, sitting on the floor, being too hot, being too cold. So yeah, a festival is a challenging environment for me!

Elements that worked well for us:

Food. We took a lot of snacks and food so we wouldn’t spend too much, but the food we did buy there was delicious and the ordering and queuing systems were pretty good.

Children’s areas: The kids were most happy in the circus skills area, with lots to play with and space to run around, they also enjoyed the big top (a small tent) at the back.

The Wild Tribe area – they loved a circle of hay bales surrounding a circle of dry mud.

Any outdoor show – the insect circus and other shows were great because the noise is easier to cope with outside.

The painting area.

Ice cream bribery and shade!

We were lucky in that we arrived on the Friday and it was dry the whole time. I hear the traffic in and out can be horrific, but we had an easy time both ways.

Watching things for the kids rather than us. Mr Tumble was a massive highlight, if the kids are happy, you’re happy. Simple.

Weather! It was dry and sunny.

Toilets- CB has an excellent amount of toilets and I never felt we had to queue (or if we did, not for long).

Elements that didn’t work:

We wanted to rent a trolley but I missed the cut off for booking online and when we tried to book one once there, they had sold out. We would definitely buy or borrow a trolley next time.

Very loud music inside upset Audrey. People dressed as monkeys upset Rex. You never really know what your kid will love or hate until you get there.

Trying to get the kids to bed at a reasonable time was not possible, but didn’t risk any late night raves with two so small. So we all went to bed together around 9 or 10pm.

We also didn’t think to book for any of the Wild Tribe activities (sword making, puppet making) and these sold out.

Planning to specifically see something was tough. We managed to see quite a few acts in a row when Rex fell asleep in the buggy, but once he was running about we had to give up and move on.

The sun. I had underestimated how difficult it might be to enjoy what was going on when we were forced to be in direct, hot sun for long periods of time. My friend had a parasol and I have to say that or our little pop up tent for shade are must haves if you are not major sun worshippers.

2022:

In 2020 and 2021 we managed to have some glamping and camping holidays that really sealed it for me, I am not a camper. So yet again, I was considering our options for Camp Bestival… and I decided on… a holiday home! Yep, we went for a holiday in Dorset for a whole week, arriving Friday, “commuting” in as day trippers to Camp Bestival each day. And I have to say, I know it’s not rock n roll, but I liked it!!

Things that worked:

Again, we arrived Friday, so the traffic was clear.

We listened to the kids and cut our days quite short. Audrey had a rotten cold, so was definitely not 100% and Rex was surprisingly tired and sensible. Our first day because they were whinging, we were back in our rental sat around eating dinner together about 7pm and Rex asked if he could go to bed!

Again, if the kids are happy, we are happy. So our biggest acts were: Cosmic Kids Yoga (absolutely packed, fab atmosphere), Mr Tumble (ditto, plus totes emosh, he’s been doing it over 20 years!!) and Yolanda’s Band Jam (just a great band for grown ups that happens to be CBeebies vibes).

The Greatest Tent on Earth- shade, glorious shade and something the kids love: kids’ talent shows!

Food: again, we packed snacks and more snacks, but we also treated ourselves to some yummy lunches.

Rides: our first trip I’m pretty sure they went on the Helter Skelter and Ferris Wheel, but then stopped there as it’s extra ££ and the queues can be punishing. This time we just thought “stuff it” and if the queues weren’t too bad (mostly earlier in the day, later or on the Sunday), we let them go for it as it made them soooo happy (most rides were about £3 a child).

We borrowed a trolley. Tough work out for Ted, but great for keeping Audrey contained.

I took an umbrella for shade.

Ear defenders. We forgot these on the Sunday (classic error) and the kids did manage without but it sealed it for us that we wouldn’t be staying late for the fireworks.

So there you have it, I guess some might think we did it by halves, but although we often throw Audrey into situations where we are unsure if she’ll enjoy it, we also do play it safe when needed. I knew that a late night music act with crowds and flashing lights would be a big stretch for her (especially when she was a bit poorly), so a nice Vics Vapour Rub and getting tucked up in bed is what she needed. Especially as she was waking twice a night because of her snotty nose. Taking it easy meant we could enjoy our daytimes there more. Lots of beautiful core memories locked in again (amongst the whinging) and that’s what it’s all about (the memories, not the whinging!).

 

 

 

 

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.

Let them be little?

~ Vickywoo ~ 1 Comment

Audrey turns nine in July and she still loves CBeebies (for any non-UK readers, this is a preschoolers TV channel, aimed at babies up to around age six or seven). She still loves dolls. She loves her toy kitchen. She doesn’t choose to read independently (unless it’s her assigned reading book from school), but she loves to read picture books from memory and be read to.

I am aware she is always going to be “younger” than her actual age. It’s not an issue for us and hasn’t really been a big deal, since having a younger brother has “allowed” her to continue to enjoy younger pursuits… In the same way that a lot of children with older siblings will find themselves interested in things considered “too old” for them. But who’s to say what’s for a six year old and what’s for an eight year old?

We were in a great Brighton park recently, an enclosed play area with a gate, big slide, variety of swing types, a climbing frame, sand pit… I guess I would say it is skewed towards smaller kids slightly, but still plenty to do for my two at eight and six. Rex got playing with a boy his age and the man with him (who made it clear he was a guardian but not a relative) started saying “I think you’re too old for this park now, it’s a bit boring isn’t it? I think we should stick to Preston Park.”. The reason this annoyed me was because it was the adult deciding, the kid was having a perfectly good time and didn’t say that the park wasn’t good enough. My two enjoyed themselves and I felt no need to question the targeted age of the park.

At home, Audrey’s love of (almost) all CBeebies television shows continues. Rex is very happy watching most of her choices too, but he rarely asks for them (he has moved onto CBBC shows, but prefers Netflix). For the first time in months Audrey chose to watch Bing and my instinct (probably because I’m not a fan) was to say “I think you might be a bit old for Bing now?” but of course I corrected myself and said of course, if that’s what you want to watch that’s fine. Even Rex sat watching it happily.

Audrey does enjoy TV targeted at her age as well as the mountain of much younger stuff, so why does it matter? It’s not that she can’t follow a plot or enjoy a more “grown up” show, she just still enjoys the young shows. That said, I’ve noticed she really does prefer mild stuff. She doesn’t mind a bad guy and a bit of conflict, but would prefer it to be very gentle. Shows for older kids can get very frantic, loud and full on – an assault on the senses at times! This is not Audrey’s vibe (Rex however – loves that).

Of course I understand encouraging kids to grow up and do things for themselves, but do we also have to start telling them what books/TV/toys are ok to enjoy? I mean, we excitedly read them Harry Potter, getting four or five books in before realising it really gets too old for them and they were bored/not really following what was going on. I’m relieved to be currently reading the Amelia Fang books which are much lighter in subject and length! And we still read two picture books a night because I love picture books (and so do they).

I remember I was in Year 7 (aged 11) when catching up with friends and we were talking about our Barbies. One of my friends said she wasn’t into them anymore, everyone agreed and so that was that, I got home that day and packed mine away. They had been declared uncool and too young. How much longer would I have happily played with them I wonder?

Audrey has asked for a picnic party at home for her birthday with traditional party games (musical statues etc) and I’m already worrying about whether her friends will be rolling their eyes and cringing at the choice to still play games. I don’t know what is acceptable fun for a group of eight-nine year olds!! I guess they are just going to have to accept what Audrey finds fun.

Anyway, I’m not sure where I am going with this little vent. I guess I just want everyone to consider whether you need to push your child onto the next level, the older thing, the more grown up thing… or let them decide when they are ready? I get you might not want them using a dummy at school age or dragging a teddy into college, but there is something to be said for letting kids take the lead. And for letting them be little for that little bit longer!

Audrey with the doll’s pram she got Christmas 2021 (aged 8)
Audrey with one of her many, many dolls! This is LuLu, she was 50p from a charity shop.

Are things getting easier or am I getting braver?

~ Vickywoo ~ Leave a comment

Half term is done and dusted. Like many parents, as half term approached, I was torn between the feeling of relief that we don’t have to rush around to be at school on time and despair that I have to come up with ways to entertain two small children for a week, whilst squeezing in work.

Train travel!

I’m often quite slack at filling a school break with daily activities, but I like to have at least a couple of things booked in. Lockdown was certainly a time where we all realised that we could survive (just about) without having places to go or things “booked in”, suddenly we just had to make do with local outdoor space, our own company and home activities. Having a child like Audrey meant that home was actually an easy place to be – but Audrey’s brother is more like a puppy – he needs his daily exercise or he tears the place up!

I always have to remind myself that with children you go through phases – where some of what they do makes them ‘easy’ and other aspects are hard. Like when a newborn doesn’t sleep well, but at least they don’t move. With a child who has additional needs, it’s harder to second guess when they’ll be “easier” and when they’ll be “harder” to deal with. For example, Audrey wasn’t mobile until she was 16 months old (when she bottom shuffled) and once she was able to walk, she wasn’t immediately the sort to wander off or purposefully run away – that came around age 5/6 ish when it made outdoor life much more tense. She was definitely what I’d call a relatively easy child when she was small. She’s more complicated now.

Beach time.

Because of my tendency to fret about the little things that could make a trip with children stressful, I usually aim to “play it safe” and take my two to places we have been to lots of times or to meet with others so I have more hands/eyes on deck. I’m usually worried about parking, distance to a toilet, their stamina for walking distances… some of this can be planned for, but general whining or dislike of the place can (and too often does) come out of the blue. You can’t always plan for a child’s mood.

So it feels a shock for me to say that this half term was a success. In the past I’ve had some disastrous days; like Audrey completely disappearing for approximately 15 minutes and me calling 999 or Rex stacking it on concrete 30 seconds into a park trip… but this week I have told my children everyday “thank you so much for a lovely time today and for being so good” and meant it! I mean, what is going on?! It had made me sit and think: are they getting easier or am I getting braver? I guess it’s a combination of the two.

In many ways, with Rex aged 5 and I’d say, quite grown up for his age and Audrey at nearly 8 but “delayed”, at times it is much like I would expect dragging twins around would be. Audrey often makes the rules, as it can be her stubbornness that dictates where we go and when we leave, although likewise she has a kind and generous streak which allows her to be convinced to give in to her brother’s demands.

This week I did things that would normally scare me (like going on a train alone with the two of them, with no buggy) and we didn’t just survive – we had a good time! We went to the cinema and Audrey wanted to go to the toilet three times during the film(!), but with a friend sat in the row behind us, I didn’t have to convince Rex to join us. In all honesty, I trust him much more to stay still or stick with me than I trust Audrey, so it was a relief she was the frequent toilet visitor and not him!

At the beach, Audrey was happy sat making sand castles for a lot longer than she usually would be. Rex adores the sea and could probably stay all day if it’s warm, but on this occasion it was a bit chilly, so he was happy to leave when Audrey was (about 90mins in). This is an improvement (it’s always a disappointment if you’ve dragged everything but the kitchen sink down there for one of them to whine and want to leave after 15 minutes!). Naturally, Audrey needed the toilet and had I been alone with them, we would have had to pack up all out stuff (blanket, water bottles, jackets, buckets… laden across the sand) and hiked back over the pebbles to visit the toilets before dragging it all back. Thankfully a friend came along with us and watched Rex whilst I took Audrey off to the loo. There’s definitely safety in numbers when you have a child with SEND (or even in fact, just if you have children)!

Ice cream fun.

Audrey still tests me of course, sneakily creating a bit of distance in the park or running off ahead around a big garden visit and she often decides she needs a wee once we are as far away from the toilet as we can be… but we got by, we had no accidents and I kept close to her without needing to sprint or feel stressed… and it’s made me look forward to the summer holiday ahead. I’m hopeful that the combination of my bravery and their progress will make for fun times all round!

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.

Our Movicol journey…

~ Vickywoo ~ Leave a comment

Ok, so this is quite a niche blog post! But I thought it might be useful to anyone with a constipated child, considering Movicol, using Movicol, about to use Movicol… I’m certainly not an expert or medical professional, but this is our poo story… or rather Audrey’s (age 7).

I think Audrey started to experience constipation around age 4/5 ish. She had been through a short fussy eating stage, but on the whole, her eating habits had become pretty good – she now happily eats a variety of vegetables and lots of fruit, but our problem is: fluids.

Audrey will sip a little water in the morning with her toast, a little bit more later and then throughout the day (with encouragement) drink a bit more. There are days when I could see she had pretty much only had a small cup’s worth of water the entire day! Using a straw seems to help her drink more and she does enjoy a juice box, but literally the only liquid I have ever seen her “down in one” is a 60ml portion of chocolate flavour Movicol!!

But back to the start of our journey. Audrey’s constipation presented itself very traditionally as several days without pooing. She would be in a very bad mood and 99.9% of her poos were in her night time nappy. To be completely honest, not worrying about poos in the daytime (being out and about and finding a toilet etc) was convenient. She progressed to pants age 5 and it was nice that we didn’t get those kind of accidents. We just gave her a spoonful of Califig most days and hoped for the best, she generally had a bowel movement every other day and we would find a poo in her nappy at night (that we would discover before we went to bed and change as she slept) or a poo greeting us in her nappy in the morning.

Once we entered lockdown, we ran out of Califig and our local pharmacy didn’t have it. I made a special trip to the big Tesco to get it, but we realised that if we were going to tackle things properly and get her on a daytime poo on the toilet schedule, now was the time to do it. So at her annual review, I discussed it with the GP (over Zoom) and we received the prescription for Movicol. I had been reluctant to “medicate” before, simply because she is on no other medication and Califig is “natural”, but I regret that now. I am the sort of person who suffers a headache for a couple of hours to avoid the use of paracetamol, but I am learning to just take the meds when needed!

With Movicol everyone warned us the dosage had to be right. It’s all anyone said when the mere mention of Movicol came up. We were advised to start on one sachet a day and scale up or down, depending on her reaction. My expectation was: it will have no affect (and the dose should be increased) or it she’ll have diarrhea (and the dose will be decreased). It was much more complicated than that.

Within a couple of days of taking it (just one sachet a day), we had seen two poos on the toilet and were doing happy dancing and thinking all was solved. How simple! [Side note: thank god I use local charity Amaze for advice on Audrey’s disability living allowance claim, as I was filling in the form that week and made it sound like the Movicol had magically cured her constipation and that was that, but I was advised by their guru it was too soon to make any such declaration and I downgraded the info to “she suffers from constipation and has recently started Movicol for this”]. How right they were… within days Audrey was wriggling and grumpy and doing “micro poos” (basically: sharts) in her knickers throughout the day. I was suddenly in a world of six or more pairs of pants a day and a constant washing cycle! And our happy Audrey was now a grump most days and not pooing other than the strange small amounts! Naturally, we lowered the dose (thinking it was causing her to soil herself) to half a sachet. But no, nothing changed. So we took a break and the night time poos returned. Then the gaps between poos returned (up to 5 days!), so we went back to half a sachet, but nothing changed.

I considered morning and evening – did the timing affect things?

We went back up to a sachet a day…. but after another 4 day gap of no movement, I remembered something mentioned on a toileting forum (yes, I’d been on a toileting forum!!) and went to trusty Dr Google to find more info on disimpaction. It basically described Audrey’s symptoms (the discomfort she seemed to be in, fidgeting, the micro poos in her pants all day, the lack of any real bowel movements) and advised we needed to “flush out” a blockage from her bowel with high amounts of Movicol. It also said to not to leave the house as you’ll have to deal with watery poos for days in order to get this sorted! Yikes. As the UK was gripped by a heatwave (and we do not handle heat), I figured this was the time to get things going and started the regime. 2 sachets a day, then 3, then 4… by day 8 we were on 7 sachets of Movicol with pantyliners in her knickers to help with minor accidents (she hated being told to wear nappies again!). I am pleased to say that aside from a couple of absolute corker accidents (I threw some pants away), she was doing really well and going to the toilet when needed. I was analysing her bowel movements waiting for the “brown watery” stage and once I felt we had reached that (this was day 9 I believe), we went back down to 1 sachet a day.

Audrey’s stomach changed. The round hard bloat she often had really went down. I feel so bad for leaving it untreated for so long. She has now, for the last 3 days, achieved “normal” stools on the toilet with no soiling in her pants and no night time nappy poos! (Though she has woken me at midnight and 1am to go for a poo!).

We will keep the one sachet a day routine for now and see how we go, I just really wanted to write this to remember what we went through and also to help anyone else in a similar situation as I am a little baffled the GP didn’t warn us about the disimpaction to be honest.

I am so very proud of her because it has been a strange journey to reach age 7 and rarely have actually pooed on a toilet. I know part of that was through fear (pain passing the stools) because she told me as much. It feels like a big milestone to be here with her in pants, able to tell me she needs to go (and don’t get me wrong, I still have to be very strict making her have toilet visits for wees otherwise she would just hold it in all day!). Children with Down syndrome may find that through the low muscle tone they don’t feel the signals for toileting like others and also, the constipation will have caused her a lot of confusion over the years too.

School return is just weeks away and luckily she has 1:1s who will help with her personal care, as the next stage is to teach her to clean herself safely and successfully!

 

 

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.