The Dark Side

I tend to post mainly about Jonah's achievements and progress, mainly because they are exciting and thrill us to bits. But it would be unfair of me not to post the dark side of autism now and then. It's not all beer and skittles and I don't want anyone who reads this blog to think that all children with autism are constantly making their parents hearts burst with their amazing achievements that are continuously forthcoming. It's just not true.

Parenting a child with autism is hard work, constant constant hard work, and it would be irresponsible of me to give the view that it is anything but. I'd hate for any of you reading this to befriend a parent of a child with autism and not give them the respect and support they deserve, simply because the view I paint of life with an autistic child was very unrealistic.

Jonah has good day and bad days, good moments and bad moments, good minutes and bad minutes. In the bad times he zaps every ounce of my being, just to help and protect him mainly from himself.

When Jonah gets angry or frustrated he bangs his head, hard. And I mean HARD! We have tiled floors and it's nothing for Jonah to sit down and literally slam his head into those tiles, repeatedly. He also side swipes his head into the wall by slamming the side of his face into it as hard as he can.

And he bites, usually just me but sometimes himself. This biting and headbanging is always accompanied by screaming and thrashing. We experience at least a few episodes of this a day, and it can last for up to 40 minutes.

It's exhausting, it's heartbreaking, brutal and just bloody exhausting. Watching your child deliberately slam their face into a condrete hard object is just torture.

We also have the general meltdowns that happen every time Jonah expects something to happen and then it doesn't. Trips in the car are a lucky dip! We take off on our journey and Jonah may think we're off to the shops, but if we turn left, which is not in the direction of the shops he will start to scream and thrash violently in his car seat. He throws his head hard, side to side in the chair to bang it as much as he can. He often will just scream himself to sleep in the car seat.

When I try and cook dinner Jonah is always behind me, wrapping himself around my legs and biting them. I have learned to watch very carefully where I step because many times a pot of boiling water has nearly come down over both of us. You'd know when I'm in the kitchen trying to cook or clean. My yelps of pain when his teeth sink into my legs are hard to miss.

And no a gate across the kitchen won't work ;-)

When we go shopping we have no idea how long we have before the meltdown starts. Sometimes I can get all of the shopping done, other times we get two or three items in peace and spend the rest of the time hurtling around the supermarket while Jonah screams in rage because we didn't do something he thought we should have done.

I'm one of those Mum's that people look at and think, "If she'd just give him a bloody good smack he'd shut up," or," Let me have him for a day. He won't be doing that caper again!" But of course we know that's not true. Nothing but years of love, therapy, help and support will ever get him over this.

He doesn't sleep. Well, not much. And his startle reflex is still in full swing so once he's asleep we have to be deathly quiet or he will wake, almost impossible with other children in the house. It's a shit day when the phone rings at sleep time. Night times are a joke. He falls asleep anywhere between 9pm and midnight, wakes 3-5 times a night and is up anywhere from 7-9am. The longest he has ever slept has been 4 hours straight and I can only remember that happening twice in his lifetime. I think he did sleep for six hours once but I can't actually remember him doing that, I just remember telling people about it....I think.

And this is our life. This is what we live with every day. Yes there are days when we don't see a meltdown or his head slamming into the tiles but those days are only a few per month so we must do our best to get through the other days, and help Jonah get through them.

So that's the nutshell. I've tried not to sugar coat it nor exaggerate. This is just how it is, and from what we hear it's a very common life to live for families affected by autism.