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Unexpected changes…

Today is Hubby’s birthday, as I blogged yesterday. So I fully expected to be writing about this today. But that was before I was channel-surfing last night, and stumbled across Louis Theroux’s latest episode in his “Extreme Love” series on ABC3. It was on autism, and the ‘extreme love’ that parents (and to a small extent, teachers and siblings) have for their autistic loved ones. I watched for maybe 15 seconds, and was hooked. I honestly couldn’t tear my eyes away – and often those eyes were pretty misty if not tear-filled.

For those of you who aren’t familiar with Louis Theroux, he’s a British TV presenter who creates documentaries on different subjects. I’ve never watched him before, although I’ve been aware of his shows. But this one was riveting. Perhaps because of the subject, and regular readers of this blog will know that my youngest, Mr 3, was diagnosed with autism almost a year ago now – but probably because the autistic children shown were really quite different from my son in many ways, but in just as many ways, were just so eerily similar.

Theroux’s show took viewers’ into the lives of 4 different families. The eldest autistic ‘child’, Nicky, was 19 and “graduating” from a special school for autistic children into what seemed like a more mainstream High School. There was another teenager who was unable to be controlled by his mum, who lived in a group home during the week. There was ‘Joey’, a boy on the brink of puberty, who would have such ‘tantrums’ that his parents (and teachers) would physically restrain him, by lying him on the floor and lying fully on top of him, and then the final family were boy and girl twins aged around 8. They focused more on the boy, Marcelo, rather than the girl, due to his ‘behaviours’ – inability to cope with getting a haircut or being told “no”, and so on, whereas she would just be ‘quiet’ and absorb herself in individual ‘play’.

My little boy is so different from these children. Yes, he’s younger. He’s starting to be verbal. Slowly, but he’s starting, which is awesome. He’s the third child behind two very sociable girls, who have interacted with him constantly since day 1 and so he is also, for an autistic child, extremely sociable and can cope with being touched and held (some autistic children can’t cope with this). He has his ‘tantrums’ however they have decreased since his diagnosis – possibly another flow-on effect from his weekly speech therapy sessions and the fact that he tries harder to communicate / gets less frustrated. He will, however, hit himself (generally his knees) and scream like a banshee . In fact, this is often what alerts people to the fact that he is not the ‘normal’ kid – because in most other areas, he’s not particularly different to any other 3 almost 4 year old. So what that he’s still in nappies, and shows pretty much zero interest in moving out of them. So he doesn’t talk back if you talk to him – but then again, lots of other kids his age don’t. It’s not that he’s “ignoring” – he just doesn’t talk!

But he’s also more similar to those children then you’d first think. I can see him going to a mainstream school. I can also see him (once he’s verbal, that is!) not understanding that it’s not okay to threaten other children who bully him, just as Nicky did. In the show last night, Nicky had said to another boy “if you don’t stop, I’ll stab you”. And even when it was explained to him that saying such things was the wrong thing to do, I could see that he still didn’t “get it”. Maybe that’s the teacher in me coming out, and recognising when I see that ‘lightbulb’ moment in my own son. I didn’t see that in Nicky last night. But then again, I didn’t really see them explaining WHY it was the wrong thing to do (admittedly, they did say ‘you’ll be put into jail’ but I perhaps would have explained that it was to do with “the law, which applies to everyone – you, me, our neighbour, your teacher – if ANYONE says those words, they’ll be put into jail”) nor did I see them explain, and practise, strategies for him to use when he’s in that situation again. Strategies to calm him down, words and phrases to say, and what to do next. Again, maybe that’s the teacher in me coming out. But I want my son to be as prepared as possible for all the things that he might / will face out there  in that big bad world, and so this has reinforced to me that I need to be proactively teaching him these thinking patterns, these behaviours, these words and phrases, before he ever has need of them, so that they become ingrained.

The reason being, I can see SO clearly exactly the point of view that Nicky was coming from. He’s autistic. Highly literal. He could feel how much being bullied was hurting him (like stabbing him in the heart) and so, in his mind, it’s fair and just to warn his bullier that he would do likewise. Just with an instrument, rather than with words, because for him that’s easier. And it’s NOT that he hates his bullier, or even that he wants to hurt him, but that he sees that it’s fair, and even, and equal, to give back to his bullier what’s been given to him. I completely understand that. Likewise I completely understand his frustration and utter confusion when he is told “you can’t do that” – and yet he sees his bullier NOT being told these things. He see that as inequality (which, of course, it is) and in his brain, that doesn’t compute. I guess, my background has brought me up to see others’ viewpoints, puzzle out how THEY are thinking, and what they’re thinking, and then scaffold the information that they need so that they can arrive at an understanding of the situation. Again, I would have explained to Nicky that his bullier WAS doing the wrong thing, and that Nicky did absolutely the right thing by telling the teacher first, and that the bullier would also be spoken too, and be disciplined for doing the wrong thing. Then, and only then, would I help Nicky to look at the whole ‘threat’ concept – why he made it, how his emotions were fine, but the way he handled them needed to be more appropriate, in what he said. Interestingly enough, it came out later that Nicky was non-verbal until about 6. When he learned that, he said, “Pity. It [my mouth] has gotten me into a lot of trouble since [I’ve learned to talk]”. How sad!!! I hope that my little man NEVER feels that way.

Mr 3 is also like the boy in the group home, in that he has no desire to control actions that could easily become “addictions”. In the show last night, that boy was addicted to food. My little man, I have a feeling that it could be gaming. And again, that’s something that I need to be aware of, and be teaching him that moderation is ALWAYS a good thing!!!

With Joey, the boy on the point of puberty, I could see my boy’s tantrums. Sadder yet, I could see that the strategy the parents (and then the teachers) had adopted for dealing with his tantrums was never going to be a long-term one. And although I’m trying my hardest to pass no judgement on what strategies they had chosen to implement with their child, I was pleased that by the end of the show, they’d adopted a different one. They’d changed it to ‘place him in his room, close the door and walk away’. Which I feel would be far more productive – and, (depending on the severity of the tantrum) is what I do with my own child! I also found it thought-provoking that Joey was asked to apologise for his tantrum, once he had calmed down. I don’t know if that would necessarily be achieving what they had hoped for. I can see where they’re coming from – and in fact, this is something I *may* consider doing with my own little boy when he is much older and more cognizant of his own ability to control himself, his behaviour, and his speech, but until that point, I can’t see how getting him to acknowledge he had done the wrong thing, would benefit the child. And prayerfully, by the time my own little man *is* this cognizant, I actually anticipate that he won’t be tantruming any more, anyway…

And finally, the twins. The girl, when spoken to, didn’t acknowledge the speaker. Perhaps that was her normal behavior, perhaps that was the cameras. My little boy will acknowledge you – most of the time. Then she went and ‘played by herself’ (sat on a swing for hours). Yep. My boy will entertain himself for absolutely ages. The boy, Marcelo, was good with letters, spelling out his name using alphabetised playing cards. My boy is good with numbers. Letters will come later, I’m sure. they also showed Marcelo having a tantrum at the hairdressers. Yep – this one is DEFINITELY my boy!!! He’s a shocker. And so we need to take him to get his hair cut, on a far more regular basis, to familiarise himself with the routine.

So. A longwinded blog today, dear reader. Not what I was expecting to write, but I feel as though I’ve explored some of the inner workings of my own mind here… and that’s always good. I love my boy. I love that I can kiss him and cuddle him. I love that he will happily copy my words – even when I say “I love you Mummy” (he’s even said it spontaneously, once!). I love that he will happily play – and copy – his big sisters. I love that his chortle never fails to make me laugh. I love that he’s a happy boy. I love that he’s growing more confident with initiating speech. And “would I take his autism away” – like most of the parents said last night? For me? I just don’t know. That’s too hard of a question to answer.

Thanks for reading this, dear friends. Hopefully tomorrow’s post will be a lot less ‘heavy’!

3 replies on “Unexpected changes…”

Hi Ceridwyn,

Enjoy Louis Theroux’s last evening and really appreciated you ‘blog on it and the way you have related it you your beautiful Mr 3. I watch a lot of programs like this as it seems to give me a better understanding of other people I deal with in work.

Yours blogs are also teaching me so much more about using words. I would have never written like this before as I always keep my thoughts to myself. Even though I don’t have confidence to blog, I am starting to get the confidence in writing better.

May God richly bless you and your family.

Love Wendy

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