Today is Toby's birthday. He is ten.
I was going to leave it there, but the words kept coming. The thing is that they're not especially nice to read, so please feel free to click out after a quick look at a really cute picture of him as a toddler, when he and Amy could still fit into a pair of builder's buckets. These days they're well on the way to making me the shortest in our family!
So, if you're feeling brave, then please read on…
Today is Toby's birthday. He is ten, but to look at him across a room you'd think him older because he's big for his age. If you were to walk towards him across this imaginary room you might start to re-evaluate your guess, because his behaviour is more like that of a toddler than a boy of his size. When you stopped beside him you'd begin to realise that this is a boy with big issues. There's the fact that he doesn't say a word (he has never spoken a recognisable word in his life) and that he lets out strange high pitched whooping noises, gurgles and blows raspberries. If you watched him play you'd see that he doesn't play imaginatively and that a toy car is just an object of fascination because it has rubber tires that can be chewed. In fact you'd notice that he puts everything in his mouth constantly, almost like it's a way of evaluating the object for texture and taste. You'd see that he easily becomes agitated and when frustrated he bites his hand or wrist. You'd notice that there are deep bruises from the frequent biting.
You may cast a glance at the woman sitting next to him. She is especially attentive to this boy, watching over him as if she expects him to come to harm at any minute. She gently but firmly removes objects from his mouth, signing with a hand gesture to him that he must stop. She gently but firmly restrains him when he goes to bite himself but he is obviously too strong for her to stop him for long and so she patiently strokes his back and waits for him to calm down. Sometimes he glances at her and in these moments you can see the love in her eyes but she looks tired and weary and sad.
That woman is me. Tired from constant broken sleep, weary from tantrums and meltdowns that can't be stopped and sad because the older Toby gets the more noticably different he becomes from his peers. There is nothing that I can do to slow the relentless pace of his growing up and yet it fills me with fear because the world is cruel and harsh and the older he gets the more harshly it will treat him.
The other day I took him to the supermarket to get some groceries. He was holding my hand and walking nicely and quietly and generally blending in until all of a sudden he rushed away from me up the aisle shrieking, whopping and jumping in his excitied way, goodness knows what had excited him so but everyone in the immediate area jumped out of their skins and one older woman screamed. I'd caught up with him by now and was holding his hand again and trying to get him to be quiet. The woman turned to us with her hand at her throat and said she had thought Toby was going to attack her and that I should control him or not bring him out because he's obviously not safe. I wanted to put the basket down and run from the store dragging Toby behind me but leaving the store without the rice krispies bars that were in the basket would have resulted in a full meltdown from Toby and I couldn't face him writhing and screaming on the floor (he's too heavy for me to lift or restrain now). I tried to explain that he's autistic and wouldn't harm her – that it was a happy, excited outburst rather than a threat but the atmosphere in the aisle was unsympathetic and I came away thinking that the incident had negatively influenced those people's view of autistic people.
Knowing that the world will be an even less tolerant place for the severely autistic fully grown man that Toby will become is heartbreaking. It hurts me that other people will be unable to see him the way I do, because he isn't violent to others – he can be so gentle and loves cuddles and tickles and has a very simple and limited understanding of the world which makes him vulnerable and unable to defend himself. All I can do is love Toby, protect him to the best of my ability and write a little here about his life in the hope that anyone reading will gain a little more understanding of autism and hopefully be a little more tolerant when they come across someone like him. That's the point of these ramblings really.
Thank you for indulging me by reading to the end of such a long and depressing post. It's not something I do often but Toby's birthday is a very difficult day for me and is full of complex emotions.
I've turned off comments today but I do have a plea to other parents:
I hope that after reading this post you go on with your day feeling thankful that your child is not autistic, because then you can channel that relief and thankfulness into something positive by helping your own children to understand that not all human beings are equal and that the strong should have compassion for those weaker than themselves. Because with more compassion there won't be so many incidents like this and this and this and this and this and countless more that form the stuff of my nightmares. And maybe then there may be hope for a better future for Toby and the other innocents of this world and growing up won't be such a terrifying prospect.
little cotton rabbits 