It’s been an eventful couple of days and I thought I’d better write it down before my brain convinces me it’s all been awful. One of the reasons I started this blog was so I wouldn’t overthink things and believe every difficult week had been the worst one, but instead remember the joyous moments that so often get overshadowed by the tougher ones.

My health is not completely back to normal just yet. I’m up and about a lot more but my stomach has not moved on yet, so Lucozade is still the main part of my diet accompanied by the odd bit of toast and chicken.

Therefore the weekend was nice and quiet. We had people over to sit in the garden. My garden seems to be a brilliant play area for any children other than River, who would much prefer to sit indoors on his own and watch The Simpsons Treehouse of Horror. (I mean, it is good, but I’m really trying to get him outside more.)

This week, Summer is off at drama camp with her best friend so she is very happy. I love it for her that she gets to do something she enjoys with her favourite person and gets some time for herself.

This also means that I’ve lost my mini babysitter and River is all mine again.

I had semi-planned for this, so Tuesday arrived and we were off to the theatre.

Now, long-term readers know that River is a regular at the local theatre where we’ve had many an adventure, but this time I thought we’d push it a bit further and I booked a relaxed performance of The Gruffalo at the Lyric in Piccadilly Circus.

A relaxed performance, for those new to the SEND world, is when theatres offer a quieter version of the show, usually with the lights up, doors open and random noises forgiven. Some theatres also have the actors come out beforehand to introduce themselves and explain their costumes so nothing is too surprising later on.

I obviously hadn’t factored in the UK heatwave and my illness when booking this three months ago but, as always, I was determined to go.

I spent the morning convincing River that he did in fact want to go to the theatre. No, not the movie theatre… the actual theatre.

Realising that didn’t make any sense, I showed him a clip online.

“Gruffalo in real life.” (It’s a Youtube thing)

“Yes.”

“OK! LET’S GO!”

First battle won.

We walked to the Underground as I explained the journey. We briefly bumped into a friend of mine but he was having none of it. He’d spotted the station so there was no time for chit-chat.

We got onto the ultra-hot Piccadilly line and he immediately asked for my phone. I managed to hold him off for two stops but it was so hot I just wanted him to stay calm. Of course, as soon as we actually went underground the internet cut off and the screaming began.

He does what he always does. Screams, cries and then goes blank. He stares into the distance and I’m unable to reach him. I always hope he’s alright when he’s like that.

The Tube gets louder and he’s suddenly brought back to life, grabbing my hands and placing them over his ears.

Eventually we arrive and we’re both very happy to get off, but the station is busy and there are two very exciting escalators to navigate. I managed to drag him reluctantly to the right, stand him in front of me and convince him to stay still, but he point blank refused to step off the escalator, preferring to trip every single time to the obvious delight of the people queueing behind us.

We exited onto the busy, hot street and I navigated us as quickly as I could to the theatre. I thought about how enormous everything must seem to him. He was amazed by the giant TV on the building and was reading every advert and sign we passed. There were people everywhere and I just wanted to get inside as quickly as possible.

Luckily it was only a short walk and, thankfully, air conditioned.

It’s always a gamble whether to arrive early or late. Early meant we could calmly look around, use the toilet, get our snacks and find our seats in an empty theatre. The downside was spending quite a while waiting before then being disturbed as everyone else arrived.

I always book the end aisle to make room for his jumping… and for my twitching (but that’s another story).

Anyway, the show began and for the first five minutes everything had been worth it. His face lit up when he saw the Mouse and they started saying lines directly from the book.

Obviously it is a play, so there are added songs and extra scenes. He wasn’t quite as keen on those bits and his attention began to wander. I brought out the snacks and rescued the situation and he was back on form laughing at the Fox.

There was some audience participation which required everyone to growl. I definitely wasn’t the only one not loving this part. There was a lot of screaming and headphones being desperately put on around the theatre.

River dipped in and out, preferring the parts that were directly from the book.

The gummies were keeping him happy until he dropped one.

River likes his treats in fives or threes. I oblige where possible and he did have three… but he dropped one. It was dark. I couldn’t find it. I would have happily replaced it but there were no more.

There was no explaining this and he was very upset for quite a long time.

We took a bathroom break and came back just in time to see Snake do a disco dance. This was not the Snake he knew so he wasn’t too sure about that either.

By now he just wanted to sit on me and tap me on the face with his new favourite rock.

I honestly started to question why we were there. I’d spent weeks planning this and suddenly I wasn’t sure who it was for anymore.

I managed to get him to watch the last part and he quietly joined in.

“And the mouse found a nut and the nut was good.”

Before I could take a photo of him dancing to the last song, he ran straight out of the theatre.

We went back to the Tube, he zoned out the whole way home and was very happy to be back on the sofa.

I watched a new series on my phone and we returned to our normal.

When I asked him later if he liked the theatre, he simply replied that he’d seen the Gruffalo in real life.

He didn’t tell me whether he enjoyed it.

I suppose that bit was left for me to work out.

The Adventure Playground

Not to be defeated (and it was pre-booked), we went off again today, this time further afield to an adventure playground for SEND children.

A morning Uber to the station and this time the Elizabeth line. Thank goodness for the Lizzie Line. We were both much happier on that one.

He didn’t ask for my phone. He happily got on his knees, pressed his face against the glass (I know it’s still underground and he will most definitely get sick now but he was happy) and said,

“Mummy, I want to watch!”

He spent the whole thirty-minute journey watching the trains and tunnels, narrating everything he saw.

We arrived at our destination and after a little walk the playground appeared. I hadn’t heard of it before but it’s an inclusive play area designed for children and adults with all kinds of additional needs.

We were welcomed by the staff and I was handed a little map, which took me by surprise because I hadn’t realised quite how big it was.

River had already spotted the soft play and immediately ran towards it.

We were one of the first families there so he had a brilliant time climbing, running and exploring while I knew he was perfectly safe. It didn’t take him long to want to investigate the rest though, so we had a quick look around the music room before heading outside.

There was a huge sandpit, but he didn’t want to get sandy (don’t blame him), lots of adapted play equipment so wheelchair users could access it too, and little wooden walkways weaving through the whole site.

He loved those.

We wandered around together finding a little maze, a play castle and eventually he disappeared for a brief minute.

Normally my heart would have stopped.

Instead, I remembered what the staff had said when we arrived. It was completely secure, there were staff everywhere and they’d keep an eye on him if he wandered.

A few seconds later I spotted him at the top of the castle waving at me.

I allowed myself to sit down on a bench for 5 minutes.

We carried on through a little woodland where there were some beautiful little houses around a campfire and mud kitchens. We stopped for a snack and a bit of log walking before making our way back after he’d spotted a ball pit.

Understandably, some areas are kept locked so off I went to collect the key.

Unfortunately the ball pit was inside what was basically a conservatory and, with the current weather, it was unbelievably hot. He wasn’t overly impressed with the balls either, so after about ten minutes we left.

As I was locking the door and we were heading towards the sensory room, a loud alarm suddenly started.

I remember thinking that it was a strange place for an unexpected loud noise.

I stayed calm, assuming it was probably just a fault like we have all the time at school.

“It’s OK River, you’re alright.”

I covered his ears with my hands.

The alarm got louder.

Staff appeared in high-vis jackets and instructed everyone to move down to the sand area. I knew it probably wasn’t a real emergency but, equally, you have to treat every alarm as though it is.

I took a deep breath.

“River, we have to wait down there until the noise stops.”

“NOOOOOOO! THE SENSORY ROOM! THE SENSORY ROOM!”

“I know you want the sensory room and we will go when the noise stops.”

“NOOOOO! NO SAND! NO NOISE!”

The hitting and kicking began.

Normally I’d have sat on the floor and waited it out.

I couldn’t.

If this had been a genuine emergency then we needed to move.

So I picked him up, walked through the screaming and the hitting until I found a log in the shade where we were supposed to wait.

Out came the emergency gummies.

Within seconds he went quiet. He ate two very quickly, had some juice and quietly said,

“I’m sorry.”

“It’s OK sweetheart. No one likes that noise.”

We sat together waiting and I looked around at the other parents who were all trying to keep their children calm in different ways.

I felt for everyone really.

The staff were following procedure and if it had been a genuine fire then every second matters. They absolutely did the right thing.

But equally, if you’re creating a place specifically for children with noise sensitivities, it did make me wonder whether the alarm button could live somewhere a little less tempting.

The fire brigade arrived, declared everything safe and eventually we were allowed back in.

The problem was the damage had been done.

River didn’t want to go back into the noisy place.

I eventually persuaded him to try the sensory room but just as we walked in…

…the alarm went off again.

One of the staff spotted him curled up crying on the sofa and immediately brought over some ear defenders.

I gave him my phone. He was OK.

By this point I was mentally making my exit plan when they discovered what had happened.

Another child had been pressing the alarm button.

The staff explained that this does happen occasionally but if an adult actually sees the child press it then it can simply be overridden. As there were lots of new families that day, nobody had seen what had happened so it had to be treated as a genuine emergency.

The magic phone bought me ten minutes of breathing space and after a while in the sensory room he was calm enough to carry on.

He enjoyed another session in the soft play, although somewhere along the way he’d managed to lose a toenail, which he absolutely refused to let me inspect. As always, I’ll wait until he’s asleep and apply the antiseptic cream then.

We found a little golf area where he loved putting balls through the tubes and finally the go-kart area.

River doesn’t like things with wheels. No bikes. No scooters.

Giant tyres though? Absolutely.

He happily jumped on those for twenty minutes.

Weirdly, I decided to have a go on one of the pedal quad bikes and actually really enjoyed myself, happily cruising around the playground while River bounced around on his tyres.

Meltdowns were becoming more frequent though and we were approaching our third hour.

Time to go.

A dusty road. An eight-minute walk. Train in five minutes. We can do this.

“Come on River, let’s run!”

“No!”

“The train is coming!”

“I want to go home!”

“I know. Let’s get the train home… quickly.”

It was completely futile.

The faster I went, the slower he went.

He lost his shoes.

I tried to carry him but who am I kidding? I’m still almost entirely powered by Lucozade. He realised I was getting frustrated and immediately started crying.

Game over.

We reached the platform just in time to watch our train pull away. He threw himself onto the floor because he wanted the train.

Honestly…

So did I.

Forty minutes until the next one.

I hate being outside London.

He inevitably fell asleep on me during the eventual journey home which meant I had to carry him off the train and sit on the platform for ten minutes while we both recovered enough to continue.

(Thank you to the lovely lady who rescued his Croc.)

By the time we met Summer and Kike I was done.

I didn’t want to be talked to, touched or be around anyone. But it doesn’t really work like that, does it?

I bought some overpriced magazines (I KNOW… THEY ARE DESIGNED TO TRAP ME!) and we headed to find food.

I sat quietly trying to digest half a sandwich while opening all the plastic rubbish attached to the magazines.

We eventually wandered to somewhere we know well, handed over our phones and sat quietly together.

I told Kike about the day and slowly I began to feel a bit more like myself. Sometimes you just need to know you’re at the finishing line.

Worth It?

Before I started writing this evening I think I would have gone to bed feeling pretty defeated. Physically defeated, yes that’s still true. I think that’s just me at the moment. But mentally as well.

Then, I make myself write.

We did it again. We went to a West End show, we made it to an adventure playground I’d never heard of before and somehow navigated trains, tubes, fire alarms, missed trains and one very random missing toenail.

No, it didn’t all go to plan.

After his bath I asked River what his favourite part of the playground had been.

“The slide.”

“The slide in the castle?”

“No… the one in the jail.”

And he was right. The slide wasn’t by the castle at all, it was by the part labelled ‘Jail’.

This time last year he could never have answered that question. He couldn’t have told me about his favourite part of the day because he simply didn’t have the language to do it. It’s very easy to forget that. I spend so much time focusing on what is still difficult that I don’t always stop and notice how far he’s come.

This isn’t to diminish how hard the last two outings have been for me. I feel exhausted. Taking River out on my own is hard work. I spend most of the day in fight or flight, constantly scanning, planning three steps ahead and wondering what the next challenge is going to be. I don’t think that’s doing me much good and I know I need to find a better balance.

But I also know that if we’d stayed at home none of this would have happened. He wouldn’t have seen the Gruffalo in real life. He wouldn’t have discovered a new playground. He wouldn’t have happily spent half an hour watching trains on the Elizabeth line or confidently told me about the slide in the jail afterwards. Every time we go somewhere new, another little piece of the world becomes familiar to him and another experience becomes part of his life.

That’ll be the last of the adventures for this week though.

We’ll stick to the garden, the Co-op and The Simpsons.

I think we both need it.