In my last post, I talked about how important it is to take time for yourself. To recharge your batteries and do something that’s just for you.
This post still honours that concept, but it deals with the harsh reality that sits alongside. The reality that is set and cannot ever be changed. And it’s how I’m feeling right now.
I am a prisoner. I am trapped in my own ridiculous tragedy, and I can’t change the channel. There is no plan B. There’s no getaway. No escape.
When I became pregnant with Pickle, all my adolescent dreams had come true. I had the husband, the house and a baby on the way, which would complete the family I had always craved. I wanted to be loved, needed and happy. Finally, it was all coming together.
We all know what happens next, it probably it happened to you too. Autism knocked at the door and let itself in, and now it is a massive part of my life and it will never ever leave. It stamped it’s way into my silly, perfect, little dream, and it shit all over it.
Love my son, hate the autism. Love my Pickle when he’s calm, cuddling me, when he’s sleeping, when he’s at school… but it’s the day to day bullshit that’s wearing me down. It’s the sensory seeking. The constant movement. Running back and forth, climbing, jumping, hand biting, flapping, spinning, nervous energy. The constant tuneless, morbid noises. The destruction of everything around him. It’s the repetitive light switches being flicked on and off and on and off. The bumping into me and stamping on my feet whenever he comes near. Climbing all over me. Elbows in my stomach. Yanking my earrings out of my earlobes. The hair pulling, the hanging off me, climbing on the dog, the screaming, the door slamming over and over and over. The manic giggling when he’s told to stop and the complete lack of giving a shit about anything I ask him to do.
It’s having to let him open and run through a door first. Every. Single. Time. It’s him figuring out he can open the car door by winding down the window, leaning out of it and opening it from the outside whilst I’m driving. It’s him running out of the front door into the road whenever I’m trying to get his sisters shoes on. It’s the spitting, the frustration, the impulsiveness. The fact that he’s tall enough to reach ALL the surfaces and cupboards now. Add in that he’s old enough to problem solve when he can’t get something, and grabs a chair or something random like my glasses to stand on. It’s the rough playing with his sister. Squeezing her. Pushing her. Leaning on her, squashing her head, taking her things, opening the stair gates to let her through to see if she falls down the stairs. It’s the instant sensory overload whenever she starts to cry and needs me in that moment and yet I have to deal with him first.
It’s the every day stuff that is on repeat. Groundhog day. The same thing over and over and over, with little changes here and there, but no let up. No holidays. No weekends, no lie in, no peace.
I. Am. Fucking. Exhausted.
I do love my child but it’s hard. He has his quiet moments, he’ll sit on his iPad or play on his marble run, but it’s short lived. And I’m always waiting for the moment when I hear the heavy footsteps go BUMP and start thundering across the ceiling to tell me he’s on his way down. Desperately attempting to self regulate his underactive sensory system, trying to fill it with whatever input he can. In whatever way he can. With absolutely no concept of how his actions might hurt or affect everyone else who is unfortunate enough to live in this house.
This is day to day life with autism. Yes my son is clever. He is sweet, he is funny, and he loves his family. But he is so difficult to live with. And as a parent, I feel utterly out of control when I hear those footsteps, and my heart often sinks. Another thing that I forgot to mention that drives me crazy is the constant sound of my own voice shouting at him to stop! Be nice! Don’t hurt! Stop stop stop bloody STOP! Then there’s the self loathing that comes with the fact that I’m shouting and hating on a 5 year old boy.
I didn’t expect this. It was not part of the plan. But there’s no resignation letter. There’s no opt out. I am literally trapped in this chaos, without the knowledge that he’ll ever be able to leave home and lead his own life. This is my forever.
Temporary breaks and time away are so important, and are so necessary, but that’s all they are. Temporary.
I wish I could feel free. I wish things were different.
I love my son.
I hate the autism.