Autism, today I hate you. I hate how, when I wake at 3am, you worm your way into my mind, making me think about things I am unable to do anything about at such an hour. Why haven’t we heard about a school move yet? How do I begin to start toilet training? When will she ever give up the dummy? Get back to sleep? No chance. And if it’s not you keeping me awake worrying, it’s you waking my child early instead.

Autism, today I hate you. I hate that there is something bothering my girl, but, because of you, she cannot express to me what that is. I hate that we have to play an excruciating guessing game, where we continuously get the answer wrong, leading to tears and frustration on both sides.

Autism, today I hate you. I hate that you make my daughter anxious about things that really shouldn’t matter to a girl of her young age. While she should be enjoying playing and learning with her friends, you make even attempting to do this an ordeal at times.

Autism, today I hate you. I hate that my girl plays on her own, running around the playground in the opposite direction to the others, who laugh and chase each other while she runs alone. I hate that you make it so difficult for her to understand games and rules, thus leaving her ghost-like on the periphery of her social group when she should be shining in the centre.

Autism, today I hate you. I hate that, because of you, people stare at and make remarks about my child. I hate that people don’t have enough knowledge and awareness of you, leading to comments and looks when my girl is screaming in public, or stimming, or has her dummy in.

Autism, today I hate you. I hate that, because of you, my girl has no idea about real life and fiction. She cannot understand why we can’t go to Bing’s house or Padget’s shop like we go to Nanny’s house or the ‘big shop’ down the road. This makes her upset, and I don’t know how to make it better.

Autism, today I hate you. I hate that when my child becomes so overwhelmed by her senses, her surroundings, her lack of ability to communicate, that she simply melts down, unable to deal with the overload. This can happen anywhere – you don’t make it easy for us to know when; one of the most predictable things about you, Autism, is your unpredictability.

Autism, today I hate you. I hate that our lives are dictated by you. Where we go, what we do, what we eat, how we sleep – or not. We shouldn’t have to consult you before every little thing we want to do, but you have us in your vice-like grip and it feels as though we must bend to your will or there will be hell to pay.

Autism, today I hate you. I hate that you have forced us to make decisions about our daughter that we have no way of knowing if they are the right ones yet. Her educational fate sits in the hands of others and is largely out of our control because you have made it too difficult for her to be educated at the same schools as her brother.

Autism, today I hate you. I hate that, because of you, there are days when my heart sinks at having to spend more than a few minutes in her company. No parent should feel that way about their child! I love her with all of my heart, but she can be so draining on my own resources at times. I am tired.

Autism, today I hate you. I hate that you have affected important relationships, that you have tested us to breaking point. You haven’t won – yet. I will do everything in my power to ensure you never do.

Autism, today I hate you. I hate that this wasn’t the plan. Our girl should be excelling at learning, loving school and loving life. She should be popular and a great friend to have around. She should be funny, and caring, and temperamental and demanding. She should love and be loved.

But guess what, Autism? She is. She is all of these. Despite you, Autism, she is doing just fine. Better than fine, actually. She’s amazing. And I guess that’s because of you, Autism.

Autism, today I hate you, but without you, what is life?

Spectrum Sunday
Mummy Times Two
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Autism, Today I Hate You
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10 thoughts on “Autism, Today I Hate You

  • February 4, 2017 at 12:21 pm
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    I think to a certain degree autism is always going to dictate the journey but life will become more flexible as she grows up and she learns to cope in situations and manage scenarios. It will get easier, doesn’t feel like it but it will. You are a fantastic parent, don’t ever question that. She is one lucky little girl to have an amazing family. xxxx

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  • February 4, 2017 at 10:54 pm
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    I echo the last comment – having been in your position a few years ago, I can say that it does definitely get easier in some ways. I know what you mean though, and it sounds to me like you could do with a break for yourself. Any chance of getting away for a bit, even if it’s just a few hours? x

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  • February 5, 2017 at 7:17 am
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    Sending so much love. It gets easier, so much easier. For you and for her. I promise xx

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  • February 7, 2017 at 7:24 pm
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    Although my daughter doesn’t have autism I can relate to so much with her learning disability- It’s a challenge for sure and I’m def up at 3 am worrying about it , but she has shaped my life for the better and for that I’m grateful. X

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  • February 12, 2017 at 9:49 pm
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    Some days are really tough – I just wish that life wasn’t so difficult for them. Big hugs xxx Thanks for sharing this with #spectrumsunday

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  • February 13, 2017 at 10:29 am
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    I think we all have days when we hate Autism, such a beautifully written post. x

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  • February 13, 2017 at 3:53 pm
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    My Pudding has MPS rather than autism but I can relate to much of this… Only I tend to use a slightly stronger word for MPS! #PostsfromtheHeart

    Reply

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