Another Side

Ok, a confession: I have another blog. (Another two, actually…but this isn’t the post for talk of memorable meals.)

I gave up on this blog for a bit because life became not very funny as we waited for Noodles to be diagnosed with Autism. There aren’t many puns to be had out of a cycle of assessments. And chuckling about public tantrums wasn’t so funny when the child in question was doing so because the world was just being one big struggle.

By the time we finally got his diagnosis this March my head was whirling. I realised I was going to have to decide how much I’d want Noodles to be shaped to conform to the norms of society versus the way he truly is (which is stubborn, single-minded and brilliant – in a lot of ways I wish I could be more like him rather than him more like me). So I started a blog to sort my head out. Thus Living With Edges was born. (BTW Noodles became SP – my Square Peg in a world of round holes – and Boo became Amy, because she said that that’s what she would be called if she had a choice.)

It’s more niche than things here, but some people found me and I have a little band of followers. Im not posting here to boost that number; I don’t expect follows or even for anyone to give it a glance. 

But at the same time, in light of Mental Health Day, my last Edges post was about the realisation that I perpetuate the stigma attached to mental health issues through inaction. (I told you it’s not a giggle-fest over there.) But if I want mental health issues to have acceptance they have to be normalised. And so I thought it was important to post here too: just to say how amazingly proud I am of Noodles.

  
It’s not always easy, but at least we have a better understanding of his issues now and so we’re trying to find a way that suits him as an individual and us as a family. It takes a lot to be different, but he does it with style. 

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A Thank You to Disneyland Paris

I am very well aware that my tone, more often than not, is grumpy. The world is a place full of disappointments and irritations and these things are highlighted all the more against the glossiness of social media.

However, there’s one place these irritations don’t matter: Disneyland! (Well, ok, technically several places, but they’re all presided over by the same mouse and they are all the Happiest Place on Earth, so count as one in my mind. Like the States’ states being the States despite the geographical separateness of Alaska and Hawaii.)

  
Despite a nocturnal hotel evacuation, freezing cold weather and the Ratatouille ride being broken down our last trip was just magical.

We couldn’t possibly hope to repeat such joy. (We’re the Gluestick family after all – lightening would probably strike us twice, but not good luck when venturing outside!) Bur we thought we’d give it a shot anyway.

Things weren’t looking good before we set off. We were driving for a start – a 360 mile each-way trip. Boo gets travel sick in the car, which is bad enough. But then the day we left the car was condemned! How a car that’s barely driven goes from perfectly fine to barely-held together in a year I have no idea (although I Have no clue when it comes to windscreen wipers so that’s no real surprise). I have never driven 720 miles as cautiously before lest anything fell off! But at least Boo didn’t vomit.

But far greater impact was possibly going to be Noodles. It turned out that those supermarket tantrums and health visitor interferences weren’t for nothing: a couple of weeks shy of our Disney trip Noodles was officially diagnosed with autism. Now, a label doesn’t fundamentally change who he is in any way, shape or form. It just changes how we deal with how he is. But suddenly, taking a child who struggles with a) unfamiliarity, b) loud noise, c) other people and d) has an incredibly restricted diet to Disneyland seemed like a very very bad idea.

Except, well, Disney worked its magic again. By the last day I could be found weeping uncontrollably in Fantasylad because it had all been so wonderful. 

And I kicked myself because the loveliness was due to so many people and I wanted to thank them all. I wish I’d got photos or had remembered their names, but it only occurred to me on the last day.

But I do want to thank everyone anyway.

So thank you to the lovely Frenchwoman at the B&B we stayed up on the way down. I’m sorry our French was shocking and that your attempts to engage with Noodles were met with indifference from him. Your hospitality was faultless and your hot chocolate absolutely delicious.

Thank you to the cast member who issued us with a priority pass at City Hall, even though I hadn’t been organised enough to arrange a proper medical certificate for Noodles. That green bit of card saved our sanity and our trip! It meant we finally got to ride Ratatouille this time for a start! A 10-minute wait he could cope with, but there’s no way on Earth we’d have made it through a 2-hour queue. It meant Boo went home happy.

  
Thank you to every cast member who allowed us to access the disabled entrances, even though Noodles looks like a normal child (all be it one whose less willing to accept a friendly wave or high five).

Thank you also for not turning us away as we jumped off and back on again for a second consecutive go. As a British family we felt self-conscious about jumping queues once, let alone twice on the trot. Believe us, it wasn’t our plan to have to go straight back on It’s a Small World, but something about repeatedly watching singing dolls appealed to Noodles’ autistic mind. 

  
With this in mind, a huge thank you to Elsa (the one cast member whose name I did remember – I wonder why that name stuck?!) who on our twelfth (and mercifully final) Small World ride in our five days, got us prime seats at the front of the front boat – all the better for taking in those singing dolls! ‘You’re twelfth go? Aren’t you going a little crazy?’ An emphatic nod (‘but it’s his favourite’) and we were ushered like royalty. It was this that triggered my weeping later on.

  
Also to those running the Disney Railroad who also gave us Noodles’ favourite seats at the back. I’m sorry he appeared to stare at you through the back window for the entire duration of the ride. 

Thank you too to Rapunzel, Flynn Rider, Pocahontas and Adam Smith who would come out to wave to the passing train whenever it didn’t clash with them being on stage in Frontierland. We rode that train almost as much as It’s a Small World and your devotion to repeatedly taking time out didn’t go unnoticed. 

  
Thank you especially to the cast member who recognised us as we pottered about the park. Maybe it was Noodles’ bright yellow mac, but you said hi as we had a second go on the Teacups, then when you were in charge of Alice’s Maze and two days later as you operated It’s a Small World. Being recognised when a meltdown hadn’t been involved was a lovely experience.

  

  
Huge thanks also to various fellow visitors. To the woman waiting for the Railroad train whose teenage son was also clearly autistic. Thank you for being understanding when Noodles wouldn’t let me engage in conversation with you. ‘It’s all right – I understand,’ you said. But there was so much I wanted to say to you. Not least of all thank you for not just thinking we were being rude and Noodles was a spoiled brat.

Thank you to those in the Animagique screening with us who didn’t tut us or tell Noodles to shut up when he cried because he decided he didn’t want to be there as the automatic door shut. It wasn’t a nice noise, but instead you just told him that it would be ok, and indeed it was. A minute or so later he was laughing his head off!

Thank you to the French dad who lifted Boo onto a better vantage point for Disney Dreams. Waiting for the show to start for an hour in the rain wasn’t ideal, but her patience was rewarded thanks to you. The show was magical, even in the wet and Boo appreciated her improved view.

  
Thank you so much to Boo, who happily went along with Noodles’ ride requests (even when it was yet another go on the Small World boats!). Thank you for being endlessly patient and I hope we fulfilled your expectations for the trip too.

  
And thank you to Noodles for the depth of your emotions. Your meltdowns when they happen might be epic, but the joy in your smile and knowing that it’s truly genuinely felt is the best thing ever.

  
The only trouble now is that in comparison to such kindness and brightness reality seems more of a struggle and a bit bleugh. Only one thing for it: we’re going to have to move to Disney! I’m more than happy to dress as Cruella De’Ville as an outlet for my default snarky setting. Not an option? Oh, at the very least plan our next trip. When I’ll remember names and make sure I properly thank everyone.

In the meantime, Disney, we salute you!