family

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.

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.

Everybody died so we bought a house…

~ Vickywoo ~ Leave a comment

File this one under life milestones. At 42 and (almost) 40 respectively, we (Ted and I) have bought our first house.

I often felt like we both made some strange financial decisions to get to this age with no home of our own or assumed that everyone else just had lots of money? It shouldn’t matter how you buy a home I guess. Inheritance, hand outs or hard work, but it certainly feels strange to know that we have this specific house because we have no parents.

Whilst sharing pictures of the kids and general day to day on my Instagram, I didn’t mention our house hunt. We’ve been looking at houses for years of course, but it’s only been in this year we’ve been in a position to buy. With lockdown and various other hold ups, we found ourselves finally “ready ready” to actually buy a house, only to find we landed right in a big property boom and mega scrum for houses!

Surprisingly, we only viewed four houses in total, the fourth being the one we purchased. I’m not sure I subscribed to the “when you know, you know” school of things before this (for houses). We’ve been around the rental market enough times, where decisions need to be quick and a “this will do” attitude generally works. However, having said we would not get a house that needed a lot of work (because we are not do-ers), we walked around this (very much needs a lot of work) property feeling all the feels.

I knew pretty soon this was a probate property (that someone had died), but didn’t ask the estate agent to confirm. We left and I burst into tears in the car. It just made sense. We are able to buy because our parents died and here was a property being sold because someone had died. There were “World’s Greatest Dad” trophies and “Gorgeous Husband” cards still in the house. I knew what it was like to have someone be gone, yet still have so much of them left behind.

After a nail-biting “best and final offers” battle, we were riding so very high on being the “winners” of our home. We binged property shows, created pinterest boards, discussed nothing more than renovations and the big garden that awaited us… it felt too good to be true. Which of course it kind of was.

So many lovely friends were pleased for us in finding our big family home, saying things like “you guys deserve it” and “it’s about time” and I guess we did look back on our “bad luck” and feel relief that all the cancer, death and house selling was behind us and now we were moving forward with a genuine grown-up long-term family home. Then came the survey….

As first time buyers, we had little knowledge of how a survey is a lot like a Disability Living Allowance form or Educational Health and Care Plan (sorry, one for the SEND families!). Basically instead of it being a lovely report about the potential of a house, it’s a damning report about all that’s wrong with the place. We sat on a Friday night reading an 80 page document that made it sound like our future home might fall down around our heads or suck up all our money trying to stay up. Eek. Suddenly we had that feeling again – of course this was going wrong, things always go wrong for us. I know how ridiculous that sounds, but it was hard not to feel like this was doomed based on experience.

Anyway, after every single person we mentioned the survey to agreed they too had hideous surveys for house they purchased, we picked ourselves up and moved forward.

There is a certain sadness that we now have a big family home, perfect for entertaining with the fact that, the reason we can afford to buy it is because that family is no longer here. However here we are, moving into a big old people house (it was with the previous family for 58 years!), with a lot of work ahead of us… but also… hopefully a lot great times to be had here

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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!

Lockdown life

~ Vickywoo ~ Leave a comment

It’s taken me a while to post this simply because I’ve felt a bit “meh”. I mean, who wants to hear about our lockdown when they are experiencing their own?

At times like these (yes I’m now humming the Foo Fighters and yes, the BBC version with a load of famous singers I’ve never seen before did make me cry), you can become overwhelmed. Which I have. I’ve been overwhelmed by lots of things these past weeks. General emotions, pressures of work/school work, thoughts of the weeks ahead, thoughts of others, thoughts of getting sick, thoughts of getting fat (I wish that was a joke), resources, memes, quotes, articles, educational activities – I am so grateful for everything that’s been available to us, but at one point the various What’s app groups were awash with this stuff and it didn’t make me think “Oh great, so much we can do, so much to refer to!” it was more like “Where do I start? Is everyone doing all the things? Am I the only person who doesn’t find this meme funny? Oh God I’ve seen that one 3 times already!” and “What should I do will all this information?!?”.

Things have calmed down a little now. Oh the kids are often feral, but I’ve learned to live with it better. Anyway on to my lockdown babble…

Audrey’s school closed 20th March and it was a gentle start of social distancing. We still went to the park on the Saturday, we still went for coffee, we just knew we shouldn’t get too close to other people and that was should wash our hands lots. It felt strange and we knew potentially things would become more restricted, but it all felt unreal.

By the Monday, it was no longer cool to hang out at the park or go for coffee. Advice for businesses was conflicted (people were being told not to go to pubs or restaurants, but pubs and restaurants were not officially told to close).

We made rainbows to display on our window the day Audrey’s school closed.

Pretty soon, we were in full lockdown mode. Kids at home, both me and Ted working at home, lots of TV, lots of drawing, lots of stir craziness, a smidge of school work and plenty of Zoom calls.

I work for a charity that helps families with children with special educational needs and disabilities, so I am aware that this kind of change has a massive impact on SEND families. For us, Audrey is the homebody, she likes cookery, TV, books, dolls and imaginative play. It’s her brother Rex, the typical child that needs to be walked like a dog. We are lucky to have a garden, but it is very small, so he dismantles the sofa everyday and throws himself around on it…  it’s all a bit chaotic here.

Like many, we started with a vague routine planned; a relaxed Cbeebies morning, PE at 9am (sometimes Joe, sometimes Cosmic Kids Yoga, sometimes zumba), followed by snack, then a learning task or two, TV and lunch, kids choose afternoon (from various activities – baking, craft, lego, games, chalking etc) , well I reckon that lasted about a week. What a cliche we’ve become!

I found out Rex hates organised exercise  (despite wanting to do nothing but bounce and jump all day), that Audrey loves this kind of exercise, but has to be in the right mood for most things and that school work may only be possible in 15 minute chunks. I learned that I’m not very patient, but that I can still get a lot of work done whilst listening to kids TV and having two small people constantly hound me for things… “Can I have “insert snack food here”?, Can you get this “lid off/bag zipped up/thing down from a high place?”, “I NEED A POO!” and so on. To get out of this happily, I have to attempt to free myself from wanting to “achieve” certain things each day. I realise that often I can feel really good about doing a lot work, but that will usually align with guilt that the kids have watched TV for hours and I’ve not interacted with them other than as snack opener and bum-wiper. On the flip side, if I have spent time, playing, teaching and interacting with them for hours, well, that usually means of course that I’ve done no work. So doing things in small chunks of time works best for everyone’s well-being.

Tiny play house in our tiny garden.

So I cut my hours at work (it’s made things much more manageable), Ted is working full-time, shut away upstairs most days from 8am-6pm. I’ve allowed them to have days that are nothing but TV and play. I have braved taking them out on my own more (two small children being told not to be near people/touch things – it doesn’t always go well) and I’ve been running/drinking a lot more wine (though not at the same time, obviously).

I have no super duper lockdown survival tips (because I don’t know how we are sometimes), but I can only say, that despite the moments of absolute despair, we have still found time to have fun. We can look on the bright side – we could still be in our old flat with a baby and no garden or our mums could be alive and having to isolate… so the timing isn’t so bad.  At least we do all get on, can work from home and we all love movies and board games and dancing and things you can easily do at home.

I guess I am really writing this post for prosperity, I want to look back and remember that this time was hard. The kids were demanding, there were lots of tears and guilt and shouting, but there has also been lots of lovely moments – our first viewing of Harry Potter, altogether snuggled in the sofa enjoying a feast! Ted bought a pizza oven, so good pizza has been a weekly treat. Audrey has been pooing on the toilet more (as opposed to her night-time nappy) and has done some really super writing. Rex has already shown he can follow lines and shapes really well in a ‘first writing book’. They have both coped really well with the change to their routine and are good at talking openly talking about the virus.

In fact, in some ways this time has been “easier” than the summer holidays! Because there is literally zero expectation that I need to plan anything or take them anywhere. Sure, we all think a zoo trip will be the best day ever, but the reality is often much more stressful than the fantasy, so in many ways it is a relief that we are at home and a brief trip to the park is all they hope for.

This week the government announced changes as we try to get things “back to normal”. Everyone seems to be incredibly annoyed and “confused” by the advice to “stay alert” as opposed to “stay at home”. I’m not confused. It’s hard to keep a “stay at home” slogan when you are telling people they can go out more. They can stay out for longer periods of time. Go out not just for exercise but also just to sit. See friends, but at a distance. Some businesses are opening again. Restaurants can deliver… it’s a gradual process of returning to normality. Potentially a trickier time than when the guidelines were clearer and strict though. For those of us with small children or children with SEND, it’s not a massive change. I won’t be taking my kids on long walks as they can’t be trusted not to lick something on the way. And I can’t have them meet a friend at a “safe distance” because no doubt they’d like to lick that friend. I jest… but honestly you should see Audrey sucking her thumb after playing in the dirt and Rex hugging a lamppost, it’s constant!

The biggest announcement in the government’s recent changes to lockdown had to be that Audrey’s year may return to school 1st June – which seems way too soon. Again, if we as a family are still practicing social distancing, what is the point of then sending one of us into a building with around 300 other humans in it?? I know she would love to be at school and I would love her to be there… but not until it really feels like the virus is no longer a threat.

We haven’t been ill, so at this point I feel like we could manage to shield ourselves entirely from Covid-19 (am I dreaming?), but if we have to jump back in before the storm is over… I don’t know, I just feel like Audrey might get hit hard (she has no underlying conditions or respiratory problems, so maybe not), it’s probably just that I see her as more vulnerable because of her additional needs.

It’s certainly funny to think after all the stress of lockdown, that now there is an end in sight and a return to school date, I feel like it’s too soon!

Rex’s lockdown fringe and ice cream happiness.

Audrey’s ice team happy face.

A Glass Half Full Decade

~ Vickywoo ~ 2 Comments

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

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

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

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

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

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

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

Or I could look at it like this…

2010: I ran my first 5K.

2011: Ted and I got engaged.

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

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

2014: I started a new job.

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

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

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

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

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

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

Belated Happy New Year!

 

 

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!

 

Why I Still Love Christmas (having lost both parents)…

~ Vickywoo ~ Leave a comment

Christmas was once the most excruciatingly exciting time of year. From age 3 to 13ish it was the highlight of  life, from the build up (decorations going up, rifling through the wardrobe for presents, the BIG shop that included fizzy pop and chocolate) to that fateful night where the anticipation is just too much and you cannot sleep to that morning (eek I am sure we were up at 4am sometimes!) where the presents were ripped open and the day was pure joy and chaos.

We had big family Christmases, I think at their peak there was around 12 for dinner. My dad’s parents were not around (aside from his stepmother but she wasn’t with us Christmas Day), but my mother’s parents were close (Granddad was hilarious and a must-have for family games), I had three siblings, two old enough to have partners/kids, sometimes my uncle would join us with his wife, I think we had a great nan around too. We had one of those extendable tables and garden chairs with cushions were added into the mix.

I always had a mince pie for breakfast. We always played charades and various games in the evening. We always ate too much. I would have a Christmas Day outfit planned (a velvet dress generally, ooh I remember a year with ski pants and a roll neck!). My mother would embarrass me with her interest in flashing Christmas themed earrings and knitwear. My dad made me ‘snowball’ cocktails (don’t worry, mostly lemonade).

Sometime in the early nineties I accompanied mum to the local garden centre to finally update our hideous Christmas decorations. For years we had dragged those sparkly pink, purple, blue, silver… (you name it) foil garlands and lanterns (that hung from the centre of the room to each corner) down from the loft. We had a toilet-roll-holder-type-angel for the top of the tree. We revamped things that year and switched to green and red traditional stuff and ditched the tinsel. It was a big change back then.

It was in my late teens/early twenties that it really hit me that Christmas would never be the same again. I was no longer filled with that crazy level of excitement, our numbers had diminished a little, but most of all we were all grown up. Only a single nephew remained “young enough” for true Christmas excitement… for me, mum’s novelty stocking fillers became eye-rollerable rather than excellent (and she was an absolute stocking-filler-pro! Pre-internet we had lots of personalised items with our name or initials on, as well as very bizarre stuff like chocolate shaped like sardines in a tin, I LOVED my stocking in its heyday).

By the time I had met Ted and we tried that Christmas juggling you do when you are first a couple and want to spend Christmas together, but also do not want to leave your traditional family Christmas behind… I was ready to accept that Christmas had changed for good.

I think that made it easier for me to live with the fact that now, Christmas is very far away from that of my childhood. I have no parents, I have lost one sibling (and the connection to her two grown up children is weaker), My eldest brother is… well that’s difficult to describe, let’s just say he’s ‘a problem’ and my other brother battled cancer this time last year. I have one grandparent left, but she doesn’t know who I am and she is in a nursing home.

Yet none of this has ruined my enjoyment of this time of year. It has definitely affected it, you can’t escape the sadness loss brings, but that’s life. Naturally every emotional Christmas advert sets me off. Every Christmas song. I am either smiling or crying or both. But I’m a grown up now, it comes with the territory.

My mother was also a fan of Christmas. She liked to complain (in more recent years) about the stress and the effort, but she still had two Christmas tress and a crazy amount of decorations. She would still stuff the cupboard with nuts, chocolates and crisps even if only a few people were visiting, hey even if no one was visiting! Now I am in charge of creating the magic (hiding the presents not rifling through the wardrobe to find them!). Now I want to wear stupid Christmas jumpers and hats, now I see the fun in the tat.

And of course Audrey and Rex bring a whole new level to Christmas. We have their innocence and joy to surround us and their happy faces at what will be (in the scheme of things) quite simple presents. I took Audrey to an eye test last week and in the car she was singing along to Wham’s “Last Christmas” (she catches on to familiar tunes quite quickly and she’s definitely enthusiastic, if not in key), it was lovely.

The thing is, I like to think that everyone is in a better mood in December. So what’s not to like about that? A couple of weeks ago, a friend posted on Instagram about Kindly and the project they were running for people to write a letter for someone who is isolated at Christmas time. So I signed up immediately and within hours I had an email confirming I would be writing to a woman called Sheila (which was my mother’s name). I mean, obviously I was in tears but I was also so wonderfully uplifted by this tiny coincidence. That same day, I had stopped to donate to an old man collecting for the Youth Cancer Trust in our local Tesco and we had a very long chat. He was perplexed by the amount of people who completely ignored him saying “Good morning” and I told him about Audrey and how she loves to say hello to people but often they are just in their own world (or on their phone/listening to something on headphones). It’s part of life now to be zoned out and not in the moment with the other humans around you.

Which is why it is important to remember that Christmas is a time to connect with people. I had little wobble the other day when our ridiculous bumper pack of Audrey’s school pictures arrived and I thought; wow, we really don’t have that many people to give these to. But then I remembered that we do. We still have lots of family left and we have many friends who are “aunties” and “uncles” to our children. We have a wonderfully wide network and I am so grateful for that.

Every Christmas will be different, it may have felt like pure light as a kid and now it has darkness too, but I can handle that, because now my children are building their Christmas memories and they only see the light.

Merry Christmas one and all x