Camp Bestival!

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!

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

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?

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?

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

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

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!

 

 

A Strong Reception

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Game of Buggy Thrones

I need to rant about buggies/strollers/prams and general small-kid mobility. I suspect this will be quite a dull blog post for many, but read on if you fancy hearing about our experience with many buggies…

We went shopping for our first pram when I was pregnant with a baby we knew nothing about (which is how it works for most people). We still joke about when we were approached by a salesperson in Mothercare, offering us options I said “We’re not Bugaboo people”, because I thought £500 was a ludicrous amount to spend on a buggy. As it happens, we did decide to buy a Bugaboo Bee. It remains my favourite buggy to date, because it was light, easy to steer, Audrey was very snug in her cocoon and just as happy when it adapted for her to face the world, it served us well.

Audrey does the splits in a Bugaboo bee buggy
Audrey in her Bugaboo Bee

What’s “funny” (incredibly annoying) about the buggy situation is that we chose one that didn’t have a carrycot option, so if Audrey was asleep in the Bugaboo and I wanted to go home to our first floor flat, I had to carry the entire buggy up a set of external steps, a couple more in the hallway and then a double flight to our flat door. Oh and did I mention I’d had a c-section? And that she had an oxygen tank attached? Ha ha, yeah not that funny. I may have picked an option with a carrycot had I have known Audrey was going to be such a good buggy sleeper… but then again it may have been the cocoon on the Bugaboo Bee that she loved (many of our friends had babies unhappy in carrycots), I guess we’ll never know.

Anyway, Audrey absolutely loved sleeping in her buggy, so it was incredibly frustrating to me that I could rarely sleep when she slept, because I couldn’t get the whole thing into our flat without a lot of heavy-lifting and risk of waking her. But we didn’t know much about baby naps when we made the purchase. We borrowed a Babybjorn sling which was great too and when the time came to return that to my friend (who was having twins), we purchased an Ergo which goes up to age 4.

When I was pregnant with Rex, I bought a secondhand cheap Maclaren stroller to use on “nursery runs”. Because Ted was able to do drop off, I figured he could take Audrey in and I could use the other single with Rex. I also panic bought a double Phil and Ted’s (quite an old model) from a friend, ready for trips out with both of them. So we had three buggies and a sling! We had moved to a house with no steps at the entrance – I was very much looking forward to wheeling my sleeping baby in so I could nap!

Two children sleeping in a double buggy
The dreaded Phil and Ted buggy. I know they are asleep but look how uncomfortable it is!

As it turned out, Rex hated buggies. He would scream and cry and eventually fall asleep but if the buggy stopped then we were screwed, he’d wake up and start crying again. So he was on my body pretty much all the time.

My life was sling and single buggy, but when I attempted the double Phil and Ted’s double I absolutely hated it. The kids heads would bash against unpadded metal bars, the hood was absolutely useless and didn’t cover the child on top, the child below had no cover (other than the kid sitting on top of them), it had a stiff metal foot brake and the steering was terrible. It’s safe to say I was immediately stalking other secondhand buggies on eBay.

We sold the dodgy Phil and Ted double, sold the Bugaboo and bought a secondhand Baby Jogger City Select – a fantastic double (but quite bulky so difficult to get in our small car’s boot). I also bought a (new) Baby Jogger Vue (for buggy training days with Rex whilst Audrey was at nursery) and this left us with 3 buggies in rotation! Ted was beginning to think I was some sort of buggy collector. The Vue was good because it’s like a Maclaren stroller, but can be used from birth with a facing you option.

Two children in a double buggy
The Baby Jogger City Select double

Eventually Rex got used to buggy life and we sold the old Maclaren. We we down to just two buggies (closer to a normal amount of buggies?!), I figured we’d keep this all going until both kids showed more promise of walking further, but unfortunately the double buggy broke (the main frame) and it pushed us to make a decision and try life with a single buggy and buggy board.

Wow this really is a thrilling tale.

We’ve been doing fine without the double, but not great. Usually Audrey is sat in the buggy and Rex is walking or scooting until he gets tired and then he is on the board. If we have the scooter it’s quite a balancing act for me – I feel much like a cart horse as I push them and all our bags etc, the scooter slipping off the buggy frame, usually with someone complaining.

Yesterday morning Rex decided he wanted to sit in the buggy, so Audrey walked for a short while (she can get almost to school, almost!), but she hates the buggy board and so it was stressful convincing him to let her sit for the last bit. I basically forced him onto the board and he cried and whined until we got to school, where he then wanted to walk to preschool whilst I pushed the empty buggy.

It won’t be long until they are both too big for a double buggy anyway, so I have to learn how to get by and in a new twist – we have a special needs buggy coming our way today!

Audrey saw the physiotherapist and occupational therapist last week and in discussing her stamina with walking, we were told that after she turns 6, we cannot apply for a special needs buggy, they would provide a wheelchair! Which is definitely not necessary, so I’m pleased we had that meeting as we were able to apply for and receive a special needs buggy that will be big enough to cover this time and on wards whilst she is a little bit too big for a standard buggy, but clearly not “disabled enough” for a wheelchair.

I was actually prepared to just “muddle through” with a single buggy and a board, but since doing the drop off and pick up this week I am unsure it is going to work. There is no escaping that the board is not for Audrey – she doesn’t have the balance or core strength. It was something Rex loved (novelty value),  but now he is unwilling to be the one who is always relegated to the standing position.

Yesterday he was sat in the buggy and unwilling to give up his seat. Audrey walked for a very short while before complaining and as I stood begging her to give the board a try – just to the end of the road, pleeeease, Rex simply climbed out of the buggy, silently walked around and stood on the board. It was a huge relief that he helped me out for once. We got half way home before he started complaining and he got the seat whilst Audrey walked, all the time whining and saying she wanted to be carried.

I had taken it for granted that they would both simply get used to walking further, but unfortunately a tiring day at school/nursery just doesn’t lead to energy and enthusiasm for walking home. Dare I suggest I panic buy of a double buggy?!? Ted will be over the moon to try out yet another model…!

Pregnant woman and child in a buggy
The easiest way to carry two – one in a buggy, one in the womb!

 

School of hard knocks

Since Audrey started school last September I have had quite a few texts and calls relating to her falling at school. Sometimes she trips, but often than not she is knocked over by other children running or playing nearby.

Yesterday I had one of those calls. I had just calmed Rex from a grumpy car nap wake up and I was preparing lunch when the call came. The school nurse calmly explained there was nothing to worry about, but that Audrey had recently been in to see her, having fallen in the playground, onto her face. Cutting her lip. Hitting her tooth (which doesn’t seem loose, don’t worry). She’s fine now. She also got quite wet so could I bring a coat at pick up? Eek.

I did my bit. The equivalent of smiling and nodding but down the phone (“Mmm, ok, ok”). I hung up. And then I cried. I went through what I assume are cliched phases – upset (cry cry), angry (why wasn’t someone stood right by her?!), acceptance (but they said she was ok) and helplessness (imagining her so far away from my arms, hurt and crying).

I pulled myself back together and sat with Rex to watch Peter bloody Rabbit for the tenth time this week and eat lunch.

If you don’t know; it is torture to hear your child has been hurt. “Some older boys were running past and they knocked her…” Did they notice? Did they care? Did she scream? Sob? Ask for me? Did someone cuddle her? Did she bleed?

Audrey at school
Audrey at school

Yes, torture. I still can’t quite get over how long the school years are. How many more of these calls will I take?

Interestingly I also had a call from Audrey’s speech and language therapist (SALT), to discuss her progress ahead of her education, health and care plan. She expressed how Audrey could benefit from her 1:1 taking a step back to allow her to play with her peers. It made me see more clearly (because at that point I was stupidly wondering why her 1:1 wasn’t basically holding her hand, stood exactly next to her like a bodyguard to prevent her getting knocked over!). There are times to be involved and times to step back. Obviously she can’t really have someone protecting her at all times. Plus she does need to have a full life experience (bumps, bruises and all).

The SALT was full of good things to say about Audrey’s progress and abilities, which was a nice uplifting call to take after the horror injury call!

And when I went to collect Audrey (expecting a gaping wound in her lip), she was fine. A graze on her lip (barely noticeable), still full of beans and thrilled to see me, definitely not scarred for life in any sense.

Yet still I found myself picturing the moment over and over. As I was brushing my teeth that night, I imagined her getting knocked over and a full shudder ran through my body and my stomach flipped. I felt sick. My sweet fragile little girl. I now completely understand why my mother used to describe as as her “precious jewels” (we thought she was such an embarrassing loon).

Audrey drinks her juice from a straw
Audrey getting refreshed after dance class

And so, today was another dance class trial. One where I should drop her off (but they allow you to stay for the first session, so of course I stayed!). But I guess I have to take a step back and start allowing her to get on with things, in the same way I do dropping her off at school.

I watched her today, filled with pride as always. She was like Phoebe Bouffay “I’m totally doing it!” and that was awesome.