Our holiday 2026

We’ve just returned from a really fun holiday in Stockholm. I made notes whilst we were there so that I could document our experiences of taking Audrey abroad with no buggy.

Our previous experience of taking the kids abroad was stressful. We went to Portugal in 2024 and Audrey was bit under the weather when we left and by the end she clearly had tonsillitis and possibly something worse… we took her to A&E once we got back to the UK and sure enough, she also had pneumonia. She spent at least a week in hospital (funny how I now can’t remember how long precisely) and a very long time to fully recover. She has a very good memory, so when we booked this holiday she asked if going on the plane might make her poorly again.

I’m very relieved to say we all made it through the holiday in good health!

Things to note about Audrey and her SEND needs: she tires easily and doesn’t enjoy walking. She is, however, highly motivated by food. She loves a nice sit down somewhere. She doesn’t mind bus/train/boat journeys. She stims (hers is generally shaking her head) when she is having a good time and in times of stress. She needs to be reminded to drink and often avoids going to the toilet, but it’s important to make her go as she can also have those “I’m busting” moments when we are no where near a toilet! She can be a runner – she might walk off or hide from us as she gets a kick out of that and also thinks she’s old enough to do things alone. She loves chilling with a doll/book/film/snack. She can be a right grumpy moaner, have proper strops, be stubborn, annoying, but at the end of it all, be positive, happy and say she’s had a great day (especially if there was ice cream).

In Stockholm at one of many bus stops

Day 1: my brother (who was house and dog sitting for us) drove us to Hove train station for a train to Gatwick airport at 10.50am, where by chance we bumped into friends so had a lovely chatty journey that passed quickly. We got to the airport and had lunch in Nando’s (somewhere we literally never eat but it worked well) and boarded our flight which left at 13.40. The flight was good, Audrey played with her doll, we played Dobble, all had a read and it went quite quickly.

We were picked up by a car (our air bnb host) at Stockholm airport and in just under an hour we were in our holiday home, at around 6.30pm. So that’s a decent full day of travel and Audrey was fine.

Our only other flight experience with Audrey was to Portugal, when she was poorly and weren’t sure at that stage if the queues and the hanging around and the travel were making her grumpy, but it as it turns out, it was probably just her illness as this time around she was pretty pumped!

Our holiday home is much bigger and nicer than we expected, Audrey is unsure of the stairs as they have gaps. The boys retrieve pizza for dinner, so we all go to bed very full and ready to start our adventure. The kids share a room with a double bed, which they weren’t initially keen on, but it goes ok.

Day 2: Audrey is up bright and early watching Trolls and eating toast. You’d think she would be tired but no. We were all eventually dressed about 10am and we go to play on the swing in the garden and check out the private jetty and the water with swans and ducks. It’s lovely and much warmer than the weather app implies it would be.

Although it’s only a 5 minute walk, Audrey is tired and annoyed that after the tiny activity we want to walk to the shop (10 mins there, 10 mins back). We talk her around on the promise of ice cream, but it’s tough going. She is pretty whiny. We return home for lunch and watch a movie. She says several times that we do not need to leave the holiday home.

The boys go for a swim in the very cold water and Audrey and I watch an insane amount of Bluey. When the joys return, Rex is thrilled by a small plastic toy horse Ted found in the water. We had just finished reading Warhorse as our bed time story, so Rex names the toy Joey. Ted cooks and we play Pass the Pigs. A very low key afternoon and evening in the hopes we replenish energy supplies for tomorrow.

Me and my gal in Stockholm

Day 3: Ambitious. We all get up just after 6am and leave the house just after 7am for a bus and then the 7.50 ferry. It’s actually very cold on the ferry and we have not dressed accordingly. Our mission: pancakes. A big motivator for Audrey, but the walk from the ferry to the cafe was perhaps a little bit too much to ask. She gets annoyed by the walk (20 mins?) but we make it there and we enjoyed a good sit down and some excellent pancakes. Happy and ready for adventure, we get a train to our destination- Junibaken. A museum of famous literary characters. And we actually start with their little theme ride which was absolutely perfect. A sit down with a story and cute scenes to see. It was pretty magical. We also really loved the Moomin Valley play area with “snow balls” to throw. Audrey was still very tired though so we don’t stay there as long as we would like.

We leave to go for a nice sit down and a drink in the sun in what is probably quite a trendy sought after bar of an evening (the whole time we are there, we have an influencer in the wild moment with a woman posing constantly and flicking her hair).

Then we get a ferry to Gamla Stan and have a traditional Swedish lunch in a very friendly and cute restaurant. Rex is brave enough to order reindeer, Ted has moose and Audrey and I play it safe with meatballs. She enjoys them, but hates the lingonberries. Rex doesn’t enjoy his choice, but we are so proud he tried it. We head off for a meander through the beautiful streets and cute shops, this is made possible by Audrey (and Rex) having a pot of Ben and Jerrys. She is literally so focused on spooning ice cream in her face she does not question the walking or stopping to look in shops, which she usually hates. Train and a bus home and everyone is absolutely exhausted. It’s about 4.30pm when we get home and Ted heads off in search of alcohol (which isn’t freely available, you have to go to specialist shops) whilst me and the kids collapse. We eat leftovers for dinner, watch a movie and have an early night (9pm ish). Rex decides to sleep on the sofa as downstairs is much cooler than our upstairs rooms which are very warm.

The perfect beach with shade for Audrey

Day 4: we know we pushed Audrey yesterday, so today we plan a quick local beach visit and a bus ride to the shops in Ekero. Audrey is really annoyed by the walk to the beach (even though it’s not very far) and she’s actually quite annoyed to even be there. We plonk her in the shade under a tree, Rex and I dip in and out of the cold water, Ted swims out to a jetty and dives off a board. Audrey cheers. She may not have wanted to be there, but ultimately she’s ok sitting down for an hour or so with her doll. One weird newish habit she’s started (that winds us all up) – she licks her dolls hair to smooth it down and style the hair. It’s not only gross (sometimes she fully licks her palm and fingers and then smooths the hair), it’s making the doll’s hair stinky. We have to accept it as she won’t stop and I assume this is a sensory/regulation tool and if it’s making her feel better and it’s not really harming anyone, we have to let her crack on.

We come home for hotdogs and more rest before a bus to the local the shops. This is not a particularly interesting part of Stockholm. We do a pick n mix from a sweet shop with a good selection, a supermarket run so we can actually eat vegetables and then home. Audrey is still complaining she’s tired. She also gets very grumpy and uncomfortable when she’s constipated and like a lot of us, struggles to be regular after travel.  I realise this is happening and that it is affecting her energy and mood. Side note: we have seen someone with Down’s syndrome pretty much everyday.

Rex instantly inspired to be a photographer by Fotografika

Day 5: we want to visit trendy Södermalm, starting with a fika stop at a hipster coffee shop that had nice buns but disappointing coffee. Audrey was already a reluctant walker, so it’s not long before we stopped again at a pretty tacky but perfect place with a jukebox, waffles and freak shakes. Rested and full, we continued to wander and thankfully stumbled upon a play park. Audrey loves a swing. I’m pleased we’ve had this moment, but always find it funny how happy kids can be in a basic playground. We are heading to the photograph museum, but it’s 12.30 and we pass a pizza place with good reviews, so to keep everyone happy we stop for lunch despite the ridiculous food they ate about an hour ago. Absolutely stuffed with pizza we walk to the Fotografiska and Audrey is really flagging. We are thrilled to discover when we get there that not only do they have a fabulous gift shop, but the current exhibition is a collection by none other than Martin Parr. An absolute fave of ours. Rex is inspired and spends his holiday money on a disposable camera. Audrey enjoys any chance to sit or lie down, so it’s handy there are options everywhere for her. It begins to be obvious she’s not just tired, but also constipated, which always puts her in a bad mood. But we push on. Ted has to carry her a bit. Our journey home feels hot and long. As soon as we get in we give her a big glass of cold juice and let her watch Spy Kids Armageddon. She is clearly very uncomfortable and she goes to bed early (8.30pm) after the relief of a small number 2. We watch a PG movie with Rex (Night Books) that has his classic fear in it – witches. He asks to sleep in with me and Ted sleeps downstairs on the sofa.

Yoga on the jetty

Day 6: up bright and early, but we keep the morning slow and Ted takes the kids to the jetty for a yoga session and he has a dip. We get a bus around 10.30am to see the royal palace which is only 30 mins away. A bright sunny day again, Audrey seems more positive when we set off (she managed another little number 2 in the morning). It’s not long before she’s struggling. The grounds are quite big and there’s no avoiding it takes some walking. We get a bus home around 2pm and have lunch and a movie chill time. A lot of wriggling and discomfort from poor Auds. Rex and I had a little visit to the jetty to dip our toes and then we had steak and chips for dinner. I share with Rex again even though he tends to whack me a lot in the night.

Day 7: another ferry trip in, nice and calm. At some point when we leave the house, Audrey alludes to the fact that she has hidden Rex’s horse, Joey. She has a habit of hiding things/chucking stuff out of windows so it’s not great news but she assures me she will return it when we get home (thankfully she has only just popped him outside on the windowsill and he is retrieved easily).

We head for what turns out to be our best fika with actual good coffee. We try to walk less for Audrey’s sake. We go to the Vasa Museum which is really impressive. And then we head to Bap (burger and pastrami) for lunch and it is perfect for our needs- delicious. We get home and it’s chill and packing before an early ish night ahead of our journey home. Side note: most days (because we are using public transport) we are faced with the stress of steps, escalators and either no lift, a broken lift or one that takes forever. Audrey has her moments, but she really bosses escalators (which can scare her) and she tackled some crazy staircases too.

The Vasa museum

Day 8: up at 6am and packing, cleaning up ready for a bus at 7.45am. It poured with rain and we were so early for our bus we just stood there getting soaked for 15 mins. Audrey hates rain but she coped really well. I guess she was happy to be going home. We were all damp and tired, so on the plane I pulled out the downloaded Bluey episodes to take the edge off the flight. Audrey was thrilled. She has shown that a flight is really no big deal to her, in fact, she holds my hand for the bits I don’t enjoy (take off and landing). 

We are all relieved when we finally get home around 3pm to see our crazy dog Barbara! The kids really missed her. It’s actually not long before Audrey finally has that much needed poo and all is well with the world again because she’s in her happy place: home!

The flight home

Final thoughts: I have definitely glossed over some super-whining and some lifts/staircase/getting-off-buses-quick-enough stress. But on the whole it’s still a lesson that we have to push Audrey or we won’t get to experience half the things we want to. I know we will all look back so fondly on this holiday and the moaning will fade!

There were also a lot of moments where Rex seemed to think he had to parent Audrey or remind us to, which was interesting. He would be fretting over her walking just a short distance from us, or he lost sight of her with that panic moment of “where’s Audrey?!”. We actually had to tell him several times to chill out and let us get on with things.

I’m also starting to see what a rocky road the teen years will be. Audrey’s always been a child that shows “cheeky” behaviour, but we’ve also easily bent her to our will/turned that frown upside down. But lately I can see that her emotions are harder to control and she has upset and anger bubbling away that she can’t always get on top of. Plus she’s doing silly things (like the doll licking, toy hiding etc) that we don’t always know what the route is. She can’t always explain why she does what she does either.

How funny is it that she’s 13 and I am still Googling “How do teach a child with DS right from wrong?” And “what’s the best way to discipline a child with DS?”??

Audrey is 13!

In July Audrey turned 13. An official teenager!

Audrey and her new Dwayne “The Rock” Johnson doll.

We went camping with friends that we know thanks to Audrey. One of Audrey’s friends from reception’s family invited us to a local camping site, which meant Audrey woke up in a tent on her 13th birthday!

We had such a lovely time (a bit of a juggle with the anxious dog, who I brought home every night), but the kids playing outside together, toasting marshmallows and running through the woods was magical.

As you may know from previous posts, Audrey is a bit of a runner, with an independent streak and a mischievous sense of humour, so it’s not always relaxing to be out and about with her. But on this trip, Rex, Audrey’s friend and her friend’s older sister, all stepped up to keep her entertained and safe.

It was such a lovely start to the summer hols and a great way to celebrate Audrey. Her friend got her the perfect present- a Barbie with a wardrobe of clothes! And we also got her the requested Glinda doll.

A donut birthday cake substitute

Now I have to deal with a teenager – wish me luck!

WDSD 2026

Hello to anyone who still reads or has found this thoroughly neglected blog!

I’m jumping back in to acknowledge World Down’s Syndrome Day, and I guess, to acknowledge where we are in 2026.

Audrey is 12 (13 in July!) and in year 7 at a mainstream secondary school. Rex has just turned 10 and is in year 5.

We have a puppy! (We’ve had her for over a year now). Barbara the French bulldog is very loved, but also a lot of hard work.

My blogging slipped away as I found short posts on instagram a lot easier, and even that has changed over the years as it can feel inappropriate to over share as the kids get older.

I remain committed to sharing aspects of our lives to broaden understanding of Down’s syndrome. So here I am, on World Down’s Syndrome Day no less, to check back in.

Audrey is still a joy. She has started puberty and so we see more of her stubborn streak, but she is still a lover of bedtime stories, CBeebies Pantos, Paddington, dolls, snuggles and salt and vinegar crisps.

There has been talk of boyfriends and crushes (her first celebrity crush is Dwayne the Rock Johnson).

She remains a keen dancer, attending a weekly SEND dance class on Saturday mornings and going to another SEND dance club in the holidays. She loves her yoga, putting on “shows” with her dolls.

She’s a big fan of Gladiators and Strictly Come Dancing and her favourite movie genre is action and adventure.

The best grumpy face

Secondly school has been a huge shift for us. The connection to the school is more arms length. I get some info via an online portal, some emails and of course, snippets from Audrey, but it’s not like primary school. Audrey gets home to school transport, so off she goes in a taxi at 8am and she returns in the taxi at just after 3pm.

She’s definitely more tired, describes some classes as “boring”, but is always happy to go. Her recent parents evening was a huge relief for me, as the teachers all seemed to love her and had lots of positive things to say. It is still a scary journey, but at this stage, it’s going well. So proud of her as always!

Independent streak

[Edit] I thought it had been nearly two years(!) since I published a blog post, turns out I quietly published something March 2024. Not that long since I’ve written one (I have a lot of unfinished drafts), but I feel like I’ll hit publish on this one (and maybe share it more widely too)…

We had a pretty good week. Audrey was seen by an educational psychologist in preparation for her secondary school plan, we (Ted and I) volunteered for Rexy’s school trip to the beach, Audrey performed her two solo lines in the choir performance of Joseph and the Amazing Technicolor Dream Coat, we all went to see Inside Out 2, I went out for drinks with friends and my brother was coming over to babysit so we could go to a 50th birthday party…

Saturday afternoon, Ted was gardening, I was clearing the top room ready for my brother’s arrival. Audrey was playing with her dolls on the sofa and Rex asked if he could watch the Lego Movie. I said yes and returned to the top of the house. I came down with recycling bits and noticed the key in the backdoor (knowing I had locked it and left the key on the side), I popped my head in on the kids, no Audrey. I asked Rex where she was and he said he didn’t know, I looked in the garden where Ted was and couldn’t see her. I turned to see her trainers missing from the spot I knew they’d been and screamed at Ted to run down the street because I knew then she was gone.

Ted leapt into action and I burst into tears wondering if I should ring 999, but thankfully within 60 seconds my phone was ringing and the name of Audrey’s friend’s dad flashed up. She had walked (a thankfully short distance) to their house, but this meant she had also crossed a road by herself. I told him Ted was about to run past- so look out for him and I’m so thankful that was the end of our stress.

When she came home and I asked her about crossing the road (the biggest bit that haunts me), she said she stopped, looked, waited for no cars and then crossed. I know her judgement and her eyesight isn’t that great, so I’m just so, so thankful she made it safely across and made it to the house of a friend (and they were home!),

There are a lot of things in play here: but to answer any why was she unsupervised? Why was the key near the door? – Well she’s often unsupervised at home, because she’s either watching TV or playing. There have been a few (but not many) strange incidents of writing on furniture or hiding the car keys, but mostly she doesn’t get up to much mischief.

But she does have “form” for going out of the house on her own. She did it when we were having work done and had no back gate, but I sprinted behind her and got to her before she’d travelled too far. And of course we had walking out of the park incidents and out of shops etc- she often feels like she is grown up enough to just leave when she feels like it.

Last weekend she wanted to leave to post a letter she has written to a friend, but everything was locked, and she could find no key, so she came to me to complain that she needed to get out to a postbox. So I could sort of see it coming, but I suppose I never anticipated how quickly she could pull herself together and leave the house without any of us registering (she has a tendency to narrate out loud the sneaky plans she has, so we normally hear her saying she’s going to go out!).

We’ve definitely learned something (don’t leave keys within reach being number one), but I can see how Audrey’s independent streak is going to continue to test us. And as she reaches secondary school age it will become harder for us to explain why it’s not ok for her to be out on her own when it will be ok for her typical peers.

She’s such a dreamy daughter, but she’s also hard work!

The Favourite

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

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

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

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

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

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

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

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

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

Camp Bestival!

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.

Mother’s Day 2022

Is it me or is every holiday, awareness day, celebration, commercial nonsense etc now much bigger than they used to be? World Book Day is like Halloween, Halloween is like Christmas and Christmas is… well it’s still Christmas but it starts in November.

Mother’s Day for me was always a time my family got together because we usually got together for a roast on a Sunday anyway. The only difference would be bunches of flowers and boxes of chocolates for Mum (she liked colourful arrangements and the smell of freesias, walnut whips and cards with ridiculous cheesy poems in).

Now the Mother’s Day machine is so big I get a an email from retail companies a month in advance asking my if I want to opt out of the barrage of gift options. It’s nice I can opt out (not having a mother or a mother in law), but it’s also annoying receiving those emails as a reminder of that.

My last Mother’s Day with my mum… I think I actually saw her on the Saturday. I think that was the day a lot of family came to gather around her bedside. She was at home, in a bed in the living room, dying of cancer. Just over a week later, she died. That was 2017.

You would think I’d be over it by now. I tell myself; well, if she was alive you’d still be holding the phone away from your ear when she tells you a long and pointless story and won’t let you speak. You’d still be annoyed when she expects you to have watch Britain’s Got Talent/Coronation Street and get ready to discuss it. And she wouldn’t drive down to visit you anyway as she’d grown fearful of driving “far” in her old age.

But that’s not the point. I still struggle with the why? It just feels so crazy to me that my sister had her mother her entire life, because her life ended at 45. And likewise my mum had her mum her entire life, but that’s because she died at 73 and good old Nan died at 101, three years later. My sister and my own mother never felt the pain of losing a mother, but I felt the pain of losing them.

I went to town on my own to watch Steven Spielberg’s West Side Story when it came out (it was wonderful). I expected to be a big sobbing mess because it was my mum’s favourite film and we played “Somewhere” at her funeral. I had a few little cries, but I made it through without becoming a mess!

Weirdly, I only realised at the moment it started that my mum would never see it, she would never even know they remade it so beautifully and that made me sad. I don’t normally dwell on what she’s missing out on, I’m usually more focussed on my kids and what they’ve been robbed of – the special grandparents experience that I had. Ultimately I was uplifted by watching this film that meant so much to my mum. When Tony sang “Goodnight, goodnight, sleep well and when you dream, dream of me…” I suddenly remembered how my mum used to sing that to us all the time at bedtime. A tiny thing that was part of our childhood and something I can’t tell my mum I remember and still treasure.

Mother’s Day is at least mine now. I am the mother of the day. And I know I’ll see lots of lovely posts about those of us who don’t have their mothers, are not mothers ourselves, have a difficult relationship with our mothers and so on… and I have the joy of my two magical children to help me through, but it will still be a day tinged with sadness for me.

Of course once it’s out of the way there will be plenty of Father’s Day opt out emails flooding into my inbox to contend with.