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. 

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!

  

Square Peg, Round Hole

The Easter holidays have begun. Which means a fortnight off from school runs and extra-curricular chaperoning. I can both simultaneously have more time to get ready for work and arrive on time. My house will be an even greater disaster zone for the next fortnight though. 

But for the next fortnight I also don’t have to worry about Noodles. Which is not to stay the I won’t worry about him, just that I won’t have to. It’ll be worry generated by myself, which is still exhausting, but comes with smaller side orders of guilt and annoyance.

I haven’t always worried about Noodles. The terrible twos were pretty ghastly in terms of his  tantrums and quests for independence that confined us to the house. But he has always been cheeky and perky and pure poppet when he’s doing his own thing his own way.

  

He’s not overly fond of Teddy (I half expect a David Attenborough film crew to rock up when the two of them are in the room together, so primal is the display of dominance)…but after a term at nursery school it seems it’s not just Teddy he’s not fond of, but other children in general.

He used to run into nursery with a bright and perky ‘Hello, other children!’ and we thought his settling in was a done deal. His key worker even said that he’d settled in far more quickly than she’d expected. Everything was happy and sunny. (Well, apart from being called through the door at home time to discuss nits or ear wax or other cringe-worthy features of having a toddler boy. But Noodles, as far as I was aware, was happy.)

But then he wasn’t. After half term I was asked to meet with his key worker. 

‘He’s outstandingly bright – his numbers are phenomenal…But he plays in parallel with the other children and can’t cope when they get in his space. And there are times when he just disconnects from what’s going on as a way to cope. We’re not quite sure why he’s like that. We really wouldn’t like to say. We don’t quite know how to reach him when he’s like that. So we’re getting a specialist in to play with him.’

I signed the permission form. And cried.

  

Then a letter came in the post from the health visitor. She wanted have a home visit development check.

It turned out the nursery sent her. I felt betrayed. The nursery could have at least had the decency to say they’d requested the visit. Maybe they didn’t want me to cry on them again.

But it got the visit off to a bad start. And that was before the barrage of ridiculous questions. Noodles underscored because I didn’t know the answer to:

If you did up the zip on his coat and then kept zipping it up and down and then left it half way would he be able to zip it right up if you asked him to? Or right down if you ask him to? Who has ever put a coat on a toddler just to play with the zip?!

  

No, we put our coats on to go places!

Would he know what this is?

  

What is it anyway? A person? More specifically, an amputee? A rubbish unfinished picture? (In fairness, it’s my own version, but it’s not far off.) A phenomenal waste of everyone’s time? What answer are you looking for?

Does he know that he’s a boy? Physically? Like comparing bits in the bath? Not really. He’s shown no curiosity there at all. And definitely not when it comes to gender stereotyping, even if it would relieve me of the Frozen obsession as Boo is over it, but it remains one of Noodles go-to DVDs of choice. But if he wants to play cooking rather than cars I’m not going to stop him and tell him it’s girlie.

Then, there were the questions that even the right answers didn’t satisfy:

Does he use complex sentences? When I answered that although he’s nowhere near as verbose as Boo at his age, he does use complex sentences when he wants to, I was then asked for examples. Anything he’s ever said slipped from my memory at that point! Obviously. When I came up with something I was then asked if he uses verbs. I guess so? As soon as she left we went to the kitchen. ‘Time to wash our hands, Mummy!’ he chirped. A complex sentence with a verb right there

If something he wanted was out of reach would he use another object to get to it? At that point Noodles climbed onto a box to reach a DVD. But it didn’t count because the box was there already. To demonstrate ‘problem solving’ he would’ve had to have moved the box and dragged a chair from the kitchen (ie up two steps and along a hallway) even though there was no need. He’s not stupid enough to expend such energy in a futile and unnecessary practice. I’d say the bigger problem was rigidity of the stupid questionnaire.

Can he draw a circle? Yes, as it happens he was happy to prove that he could, but she took no notice when he declared that a skwinky, three-sided ‘circle’ was a triangle. Instead he got a cross in the ‘failed’ box when he didn’t then want to draw a horizontal line. ‘No thank you,’ he said. ‘Well, at least he’s polite,’ she said. Then he had a tantrum. But then he’s a boy – he’s not meant to like girlie things like drawing. (You can’t both have your cake and eat it, health visitor lady.)

She also had no interest in anything not contained within her range of questions. So no interest in the things he can do. Just the things he’s expected to do, as if he’s a pre-programmed robot with no autonomy. No interest in him as a little person in his own right, with favourite stuff and foibles like any person big or small.

‘Do you have any concerns about Noodles’ development?’ she asked just before she left.

‘Well, I didn’t before this, but I do now!’

And, yes, I cried.

Because it seems he is a square peg. Even if he’s engaged in something he tends to keep things in. Watching him at Nursey this week, he listened intently to the story, but he didn’t shout out the answers like the other kids. He searched for plastic squares during the Easter egg hunt, but he did it on his terms, away from the groups of boisterous other children. He sat and looked at books rather than colouring in or crowding round the table with the wooden railway on it. It wasn’t that his way was wrong it was just different.

  

And by-and-large there’s nothing wrong with different. The most interesting people are the ones who’ve bucked the trend and done things their own way. Who wants to be a sheep?

BUT we live in a world of round holes. He’s only at the beginning of his education and with school it’s all about fitting in. Those square pegs are the ones who get in trouble for acting up or not doing things the ‘right’ way. They’re the ones labelled unfavourably. They’re the ones bullied and not invited to the parties. 

Noodles is three. Surely that’s too young to be told that behaviourly he’s the wrong shape. Surely at three your headspace can be pretty much any shape you want it to be? 

But what if the nursery staff and the health visitor are right? What if there is something wrong? I find myself questioning everything he does. From the way he builds his bricks to the way he bites his t-shirt (pica is a sign of autism), from the things he laughs at to the things that freak him out. 

Isn’t life easier for the round pegs?

Should those corners be shaved off to fit the holes? Should I be looking for labels and support? Or is it the re-shaping that does greater harm? Making children aware that they’re not right if they’re not the same? I don’t know.

Mercifully my sister shed some relief on the situation:

‘Well, I hated other kids when I was little – I still don’t much like other people to be honest. Plus I was also thick and I had an eye patch. I was a right old mess. Sounds to me as though Noodles is going to be fine.’

I think my sister’s right. When we were growing up I thought she was perfect. She wasn’t thick – she was in fact so damn bright she was off the scale, but that can translate as thick because people become exasperated regardless of which end of the spectrum you’re off. But she also had to have a lot of eye tests and wore thick plastic glasses with one lens painted out to strengthen her lazy eye. So again she was different. And it’s hard to mix when you’re off kilter with the other kids.

It hasn’t stopped her from turning into an amazing adult though with a great job and a loving boyfriend and great friends. For a square peg she turned out just fine.

And quite possibly Noodles will too. There are plenty of places that accept the square for those strong enough to hang on to their corners.  At worst he can live in Cambridge, surrounded by other academics who struggle socially. Nothing wrong with that.

And it could be that once he sheds his early years his peg might not be so square after all.

So I shall try to stop worrying so much about him and instead enjoy those gorgeous belly laughs that he’s so willing to give when he’s happy. Although I can’t say I’ll give it up completely. Worrying’s one of those things us mums do so well. We’ll just wait and see if it’s something worth worrying about.

  

The Explorer

Ah, the sun has returned. I’m grateful, not least of all because it means Noodles can get outside. (Although having the slide covered in a thousand just-hatched baby spiders and Noodles desperate to clamber all over them/them all over him was not especially lovely.)

At the moment Noodles loves to take any willing victim on an expedition. Leaving the route entirely to his choice when time permits can take you on a completely random and overlapping route around town.

Yesterday, for example, he declined his usual stop at the train station in favour of a trundle through the park.

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He chose to totter around the perimeter of the basketball court but then shunned the playground and parkour area. On to the train tracks, back and forward, back and forward and then down the road, stopping to scrunch in gravel drives and read out door numbers.

Further and further down the road – walk, carry, walk, carry – and then a very enthusiastic clamber along the wall of the college.

By the end of the road though the explorer’s legs are started to tire. He sits on the floor and refuses to move, his backpack luckily acting like a pillow. I didn’t have the required provisions of chocolate buttons and ‘juice’…but I did have spare change in my purse. If taking Noodles for a walk always have ¬£1.40 on you to catch the bus.

Straight to the back seat, the happiest boy in the world. Money well spent to save a) my back and b) a tantrum.

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It’s another nice day today. I wonder where our travels will take us? I’ll make sure I’ve got sufficient provisions and plenty of loose change on me to cover all possibilities.

Inspired by The Daily Post Photography challenge On the Move.