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Day 47: Being Mum

So, I know I was going to write about ADHD, and I will definitely do that, but today was one of those days where it hurt to be Mum, and in particular it hurt to be a SEN Mum, and to be The Cat's Mum.

The Cat absolutely hated school in Year 1, and had to be carried through the door each morning and held, struggling, while I shoved the door closed and someone inside locked it.  I would walk away to a soundtrack of loud growling (his angry noise) and bangs on the door, telling myself it would all be okay, because it had to be. The teachers tried hard, but he just wasn't having any of this learning nonsense. By the end of the year, I was pretty sure I'd need to look for specialist provision for Junior School, if not before. Then a miracle happened: the children of the three-form entry were mixed into new class groups for Year 2, The Cat found a friend ('The Friend'), the teacher and TA moved heaven and earth to accommodate him, and suddenly he liked school enough to go in and attempt the odd bit of work -- as long as he could put his own particular slant on things. So, for example, in an exercise about the seaside where children had to make lists of things that were 'dead' or 'alive', he swapped the column headings 'to trick the teacher'. Crabs were dead, rocks were alive, and so on. The lists were full and perfectly organised, but under the wrong headings, just for a joke. Then there was the poem about the seaside that didn't mention the sea but listed facts about Stampy and Minecraft. One of the things I love about The Cat is his sense of humour and mischief, and also his unique way of sorting ideas, and we were lucky enough to find staff who also found him funny and, dare I say it, somewhat charming. I don't think there are many teachers would who intuit that The Cat was playing a trick when every maths answer was out by 100, but these ones knew his style, and could figure out that he knew the answer and had just added the extra 100 because he found it funny. He had special arrangements for going in each morning, lots of TA time -- not because of any special funding, but because the class TA was able to work magic and be where she needed to be -- and teacher support, his own quiet work space, clear targets and daily rewards, use of a laptop, a box of sensory toys and oodles of other accommodations, and he was finally happy. Happy, but unlikely ever to admit to it, because that's just not his style, and he's aware that on tv the cool kids (ok, just Horrid Henry) hate going to school.

When Year 3 began, he decided he was okay without special arrangements and wanted to line up each morning like the other children and sit at a group table like everyone else. He even rejected the chew toys that had been his sensory lifeline for years. And, with the help of a super-experienced, down-to-earth teacher with very clear expectations, alongside the hugely positive influence of The Friend, it worked out fine. The Year wasn't without bumps, but I really began to relax about school.

And then, from the first day of Year 4, there have been warning signs that he is not happy. On the first day, the whole class missed their part of their Break for generally poor behaviour, as I understand it, and The Cat decided he was done with this education lark. He's been fine once I get him inbut getting him in now involves dragging him out of trees or out from under the monkey bar platforms, then wheedling and bribing him across the playground. And today, nothing worked.

We made it to the office, and the school could not have been more supportive. The SENCO dropped everything to talk to us, got my little Cat into school after about 40 minutes, and then spent large chunks of the day with him. He came home with a smile, and before that had allowed her to call me and say that his morning had been 'quite good'. In Cat language, 'quite good' is a triumph. 'I only hated most of it' would be a more typical answer. Anyway, at the point where I decided the best thing was to leave, my nerves were shot and it was a case of leaving or crying in front of him. He'd spent the whole time in the office saying how much he hated school and listing every injustice he'd endured over the last six weeks, rehearsed all his arguments about knowing enough already and not knowing why anyone needed to know that he knew it, and had a good rant about the new maths methods that he sees as an overly long-winded way to get to an answer that's already in his head. Throughout his desperate outpouring, his anxious twitches and tics were on full display, and the only thing that was really clear was that he wanted to be with Mummy today, and that was that. Finally, exhausted by his own emotions, he quietly laid his head on his arm and wept. We see rage tears a lot, but so little of this defeated misery. When I said goodbye, there was zero sparkle in his eyes, which, tragically, is pretty standard on a school morning, but there were also tears, a look of pure pain and a sense of disbelief that his Mummy, who gets him through all sorts of challenges, really was going to betray him by leaving him there. And I had to leave him, because that's what he needed.

But this was not supposed to be a blog about school as such, because they couldn't have done more for him or for me this morning, and now we're back into crisis mode I know we'll work together to make him less desperate and angry and sad. What I really wanted to say is that it all started with the milk.

This is the tricky part of autism. There's a moment of crisis, but where The Cat is concerned, many of those moments have been building for hours, or days, or longer, and the crisis could happen any time, anywhere, when one last experience tips him into a state of 'overwhelm'. Being Mum is being a detective, and trying to work back through time to figure out where the mountain of overwhelming feelings or sensory inputs have come from and how they have finally tipped my Cat over the edge. Sometimes you work back to a larger problem, and can tackle it, but sometimes it's a series of small events that a non-autistic child might take in his or her stride. So yes, we have a few issues to sort out with the teachers, but when he reached the point of needing to sit in a bush this morning instead of lining up (with me nearby and in sight, but totally silent, calm and pretending not to look), it wasn't really about school.

It started with the milk. The Cat will only eat Weetabix for breakfast, and the milk had run out. It actually ran out yesterday and he had managed, with support and much encouragement, to go to school on a bowl of dry cereal. I reassured him that there would be milk today, then plain forgot to buy any. So the routine had changed not once but twice, and Mummy, his safe person, had lied. No, in his black and white world I hadn't made a mistake, I had lied and let him down. In a world where a child is constantly on edge and overloaded by stimuli, routines are a key source of security, and I can assure you that there was no chance at all that he'd just 'get over it' if I forced him to try an alternative breakfast twice in a row.

Thanks to the world's most understanding neighbours, the milk problem was solved, but then along came the 'different Tuesday' scenario. Key point: change is not good. Every Tuesday, The Cat sees The Friend after school, one week at our house, the next week at his friend's. For the last two Tuesdays, everything has been out of kilter. Because I had visitors from NZ last week and I knew this would mess with his fiercely territorial approach to life, I arranged an extra visit to The Friend's house for The Cat. This Tuesday he went off to his friend's house for the third Tuesday in a row, because his friend was having a birthday tea. Although he loves going there more than anything, I could tell that The Cat was feeling very uneasy about the change in routine. Then, to add to it, he remembered this morning that the birthday tea was going to involve two extra boys on 'his' Tuesday. Then he couldn't find the card that he'd made last week, as we'd put it in an extra-safe safe place. I reassured him that I would hunt high and low for it today, but of course I was the same Mummy who had 'lied' just the day before about milk. Scary, unsettling stuff.

We eventually got out the door, and he told me exactly what it would be like when he got to school and saw his friend, and how he was going to say 'Unhappy Birthday - not!', because that would be hilarious. Of course I tried to talk about the fact that it might not be exactly as he was imagining it, but I, as we know, am Lying Mummy, because of the milk. When we got to school it wasn't as he'd imagined, and his friend was in fact running around with other friends, who did not want to be interrupted by The Cat. Another autism red alert: The Cat has trouble navigating social situations. When he met 'The Friend', they were a duo sealed off from the world for most of a year, but now things are changing and The Friend has other friends. We've been trying to tackle The Cat's feelings about this change for about a year, and not getting anywhere very fast. Anyway, to cut a long story short, when the whistle went to line up, The Cat was not up a tree or under the monkey bar platform. He was sitting on a tyre looking tearful. We started the usual quiet chat, but by the time I'd started to make progress, the class was disappearing through the door. Cue panic and retreat to bush. And you know the rest.

So really, none of it was about school or milk or birthdays. It was all about autism. I love this boy so fiercely; so very, very fiercely. I also want to throttle him or run away from him quite frequently, but like every Mum, I adore him. I am all the more fierce when it comes to The Cat, because his need for me is so great. (Day-to-day life with him feels like those occasional days when one of my other children is running a high fever or has a broken bone, and I am sick with worry and their need nearly overwhelms me. But that's another post.) There are memes that go around Special Needs groups from time to time saying things like, 'I love my child but I hate the autism'. Can that really be an acceptable thing to write? I find such statements utterly sickening, because my child wouldn't be my child without his autism. He is his wild, quirky, funny self because his brain is wired in its own unique way. He makes me laugh more than anyone I know and, when freed of demands, is a creative, clever, happy, laughing child. I am a better person for living with an autistic child, and I firmly believe that there will be a space in the universe for an adult just like him to do something that no other adult could ever do. I'll be there with his Minecraft tools carving it out if required. But what I hate is his pain. As with all gifts - and I do see his amazing brain as something very special - there is a flipside, and his flipside is the pain of never quite adapting to the world around him or feeling safe to roll with whatever happens next.

Being Mum is feeling his pain and not being able to make it go away. Today it was the eyes without sparkle, and although wonderful people carried him through the day and he came home happy from the birthday tea, I can never relax. Tomorrow is another school run, and we'll just have to see how it goes.


I would understand none of these things about my son if I hadn't found The ADD-vance ADHD and Autism Trust. To support their work, please donate at:
http://uk.virginmoneygiving.com/LizThompson

Comments

  1. I can identify with this so much Liz. You're an amazing warrior for all your boys xx

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  2. I love the autism too. But I hate when school think it's OK to dish out whole class punishments - surely that should have disappeared with the Dark Ages?! You're doing a fab job, and you'll know when/if it's really time to try something else re school xx

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