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Well, we are a little further into January and already a little more restricted with the second wave officially hitting Peru. I'd be lying if I said my anxiety about this hadn't gone into overdrive and I was awake at 2.45am worrying about what we would do, where we are going to go, what happens in July, etc (July being when my contract is up and we need to be moving on out...to where, to what, to who TF knows?!). Some schools have already announced they'll be online till Easter or for the first term, but ours has not. I mean, it's a no brainer to my mind. Numbers are up, new strain is here, we are not getting the vaccine en masse until likely 2022, winter will come and we will be in the same mess we were in last year. With an even more crippled health care system. That is my prediction of the situation but I am VERY willing to be wrong. However, all of these feelings and instincts about this NUTS time makes me think everyone should just stay home, stay put, stop flying round the friggin' world and let this pass. I've thought a few times about going to the countryside with E and dogs times three, but it just fills me with anxiety and guilt. Why should I, who has a gorgeous house to live in, and relative freedom to walk around, sometimes meet for lunch in an outdoor cafe and feel pretty safe because I know my friends are being as safe as I am and we have the luxury of social distancing, why should I take that privilege and travel with it? NO OFFENCE to anyone who has chosen to do so - we are ALL living our own personal hells. This is just how I feel about it - and, do remember, we moved house twice, so we have had a change of scene during this shitstorm. So, while things remain as they are, Emilio is as happy as can be with our lot, I am full of gratitude and can be content with what we can do at the moment.
Now, on to the reason I write. This topic has been something that keeps cropping up and some friends with diagnosed or getting diagnosed relatives have asked my opinion on. Everyone knows I have an opinion about pretty much EVERYTHING. This is no different. That of which I speak is behaviour and, more specifically, behaviour therapy for children on the spectrum. Now, when I was a Brand New Autism Mama and sought the advice and counsel of thy Every Knowing Paediatric Neurologist, I listened to his sage words of ABA and various different routes to managing this condition. I listened and nodded and wrote down those places that would take my baby in and help him live life and succeed in our world. I listened. But then obviously I researched. First port of call was my autism guru in London who said something vague like, 'mmm, yes, that's one approach' (love you, Mansi). Next was my good pal, Google. ABA therapy (Applied Behaviour Analysis) is effectively dog training for the neurodivergent. Yes, I said that and yes, I think that. You are allowed to think differently and I respect that. A little tiny Google into the Autism Speaks history of adverts will send chills down your spine...much in the way they portrayed an autism diagnosis would do to your family, neighbourhood, entire life. Horrific, dehumanising and utterly, UTTERLY exclusive and judgemental. These guys are big advocates of ABA and here, I'm sure it can be done well and I'm sure it works for some people. No judgement from this end. It's just definitely not for us.
See here. This is how I see autism. That brain has developed differently to mine and that doesn't mean mine is better and the autistic brain is worse. Not by any stretch and really, how arrogant to think that, if a person does. I realise this may sound cliché or buzzwordy or 'pop culture'y, but this is how I genuinely feel. And this is an important point when thinking about behaviour and behaviour therapy. Does my son display behaviours that do not match the many neurotypically developing children I've taught and watched grow up in my family in the last 30 years (note, I haven't been teaching for 30 years but I've been an auntie pretty consistently for that amount of time!!)? Yes. Yes, he absolutely does. He bangs his hands on things and makes an 'ooh, ooh, ooh' noise with his teeth clenched. He lines crap up. Sometimes, though, not a lot. He ignores people. He doesn't respond to his name. He finds eye contact difficult until he's completely connected in a moment with me. He thinks it's hilarious to run away from me, even when it's dangerous. He repeats the same words over and over until I acknowledge the word. He takes things from other people (toys, food, whatever). He bulldozes through situations with absolutely no understanding of other people and how they might be feeling. The list, dripping with negativity, goes on. Do I think that any of this is a reason to therapise him? No, I do not. Because what I see is a boy who is curious about specific things. Who loves to be around people and soak up their energy but doesn't interact in the way I would. I find that fascinating and enlightening. Who will chase bubbles for endless periods of time. Who will light up an entire room with his infectious giggle and thousand Watt smile. Who notices intricate details that I never would. Who will stop at nothing until he gets what he wants. Who placidly gives back what he has 'stolen' and carries on his merry way. Who cuddles and tickles and giggles and chases and curls up with stories and loves and who melts my heart when he comes home and runs into my arms, saying, 'Nunny, nunny, nunny' in the most adorable voice ever. What I see is what he is and not what he isn't.
Of course, I am guilty of losing it, frequently, of getting driven crazy when HE WILL NOT PUT ON HIS SHOES WITHOUT ME CHASING HIM ROUND THE HOUSE, HIM SHRIEKING WITH DELIGHT. Of course I'm not bloody perfect and all accepting. No one is. But what I DO accept is that my little bundle of wonders will never be like the neurotypicals and nor would I want him to be. Why would I try and 'train' the autism out of him? Why would I invest in a reward system to make him squash who he is? To learn that he needs to behave in a certain way to fit in? To make him question his worth when he is perfect as he is? No. No, I will not do that to him.
The advice that was asked of me was about specific methods of 'reducing autism symptoms'. Well, what in the hell does that even mean? The only time I think behaviour therapy is a necessary thing is if the child is self injuring or is aggressive. That's literally all I got. E is going to need a bit of carrot and stick training to learn that running away in a huge city, at the pace he does, surrounded by cars, isn't a good idea. I'm willing to accept that. But for everything else? Nope. No siree, no way. His behaviour is fine. He shouts 'theess waaan" on repeat, louder and louder, in order to get what he wants. I'd say most parents battle with that. Invariably, I give in. I am currently wearing so many hats that I seriously NEED to pick my battles; autism mum, solo mum, pandemic mum, trauma mum, working mum...it's endless and it's exhausting. But it is worth everything to let my child learn happiness, love and acceptance. Because surely, at the end of the day, that is actually all that matters: the Tiny Humans are happy and full of love for life. As I've said countless times, I worry constantly about not doing enough, being enough, getting enough (therapies, etc) and that this pandemic will have stolen irreplaceable time for E to have had the correct interventions that will better set him up for navigating life. But my very wise mum said very recently that I have a happy child and not every child has that right now. And she is 100% right. Happiness trumps everything. So be off with you, Behaviourists! We are fine as we are.
