children

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!).

 

 

 

 

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!

Poster girl

~ Vickywoo ~ Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

 

 

We Have a Runner!

~ Vickywoo

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

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

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

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

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

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

 

A belated hello to 2017!

~ Vickywoo ~ Leave a comment

2016; quite a year.

It started well, with a lovely bit of maternity leave when Audrey napped and on nursery days I could go to the cinema or sit and drink hot chocolate alone. Or nap. Or stare into space. Basically just “be” without a child around.

Then February came; Rex arrived! He turned our lives completely upside down and took me from tired mummy to completely-shattered-and-almost-broken-mummy.

Both my children took their first independent steps! Audrey in October, aged 3 and 3 months, Rex in December aged 10 months and 4 days. 

I’ve was so very low at times last year and sometimes too focussed on that. I am looking forward to feeling more positive, as Rex sleeps more and they both become more independent. 

I have been wishing away the baby days, but please be assured I have also taken time to appreciate Rex’s delicious baby head, his tiny toes, they way he looks at me whilst having his milk, they way he needs a cuddle after a fall… all of his good baby stuff I will remember, I know I’ll miss it, but I am so excited about this summer. Two walking children!

Rex has started saying “Dada” more often and even aimed it at Ted, so we are taking that as his first word. I’m probably more excited that he has signed “milk” and “more”. We love Makaton.

In the meantime, Audrey’s talking is coming along fantastically and she surprises every day with new words and clever phrases. “Audrey’s so happy”, “Rex, what’s wrong? D’you need a duddle?” … as I type this she is playing with a doll saying “You done a wee wee? Do a wee wee in the potty? Say goodbye to everyone”. She’s a star.

Scarily 2017 would be the year Audrey goes to school, but we have made the decision to defer her until next year, giving her extra time to be potty trained, be a strong walker and generally close the gap between her and her peers. We have picked a local mainstream school and fee very strongly that Audrey will thrive there. She loves learning through play, she is a goody-two-shoes and I think she will be popular at primary school.

Anyway, let’s get 2017 out of the way first. I need to find a job so that could lead me down a new path. And once Rex turns a corner and learns a bit about being gentle and sharing, he and Audrey will be great playmates.

Cheers!
My two crazies.