27/02/2017 12:00 GMT | Updated 28/02/2018 05:12 GMT

Dear Autism: I Hate You

Marcin Pawinski via Getty Images

Dear Autism.

I hate you. I dislike you most days - but today really takes the biscuit.

I read so many blogs about you online. Most that are positive and uplifting. I've written posts that do the same. I think these stories are important as they help raise awareness. They celebrate our children wholeheartedly and quite rightly so.

But recently I haven't been celebrating. Recently things have changed. And it's all your fault. And for this; I hate you.

I've heard others say it. I have said it in anger, upset and desperation. But today I really mean it. Hate... strong word. I don't hate anyone but I really hate you.

When the screaming and crying don't stop, when he's broken the computer screen again, when your respite is cancelled last minute. When my son is crying for food and signing 'hungry' but has eaten five packets of crisps in a row. I know that feeling. Deep frustration & poisonous rage.

Because of you I live it.

Tonight my son cried for hours because he couldn't take an item of food to bed with him. He had just brushed his teeth and had been raiding the kitchen cupboards all day. He couldn't or wouldn't understand. Banging the bedroom walls with anger, kicking his bed frame and crying tears of frustration until he fell asleep. Frustrated because he thinks we don't understand when actually we do.

I hate the tears.

Autism. I hate that there is something bothering my son, but because of you, he is unable to express to me what that is. I hate that we have to play this excruciating long and painful guessing game - where we continuously get it wrong.

I hate that because of you I can't enjoy my son like a mother should. I love him with all of my heart and soul - but I hate that my expectations of what he 'should be' sometimes stop me appreciating what he is.

I hate that you affect my relationships. Friends and family. My work. I really fucking hate that you have tested me and my husband to absolute breaking point. You haven't won as yet. I will do everything in my power to ensure you never will.

I hate that because of you I'm even writing this blog! Drowning in self pity. Wrestling with my heart's desire to protect his innocent soul, but also sometimes angry at his behaviours, challenging him to break out of the safety net of familiarity where he often gets stuck.

Sad and lonely, sleep-deprived, depressed multi-taskers that we are, we plod on. Not just parents - but a carer, teacher, advocate, therapist, voice, protector, and best pal.

I really despise how you rip the joy out of his life. Out of my family's life. I hate that you will never leave. That there is no cure. You are here to stay.

I hope you are not offended by my honesty and overwhelming feelings. I'm sure I'm not the first to be feeling this and doubt I'll be the last. I'm just a mum and a wife. Six years since diagnosis day I'm still trying to understand you so that I understand my son.

I hate you but we are in this together. So please help me - so I can help him.


Marijka (Stan's mummy)