They Can’t Know

 

They can’t know what it feels like to be given the news. To stare at the picture on the wall and try to block out the words coming out of the doctors mouth. 

They can’t know what it feels like to have to tell your family and your friends and the rest of the world that everything has change. 

They can’t know what it feels like to long to hear a word fall from silent lips. To want to be called mummy. To hear “I Love You”. To hear anything at all. 

They can’t know what it’s like to watch your child in pain. Inside and out. To watch them scream and cry until there can’t be anymore tears left but there are. There are always more. More spinning and throwing and shaking and stimming. And they can’t know how it feels when they say that their child has meltdowns too, or “they all do that”. It’s not the same. It’s not the same. 

They can’t know that every time they do say it you shake your head and wish they could walk in your shoes just for a minute. 

They can’t know what it’s like to have to pay for having a good day with a week of bad ones. When he forgets how to speak. When he can’t cope with the decision about what to have for tea because it’s too much. Too hard.
 

They can’t know what it’s like to have to ditch your trolley in the supermarket and bail because they are looking now. Looking at the little boy crying and losing his shit in the trolley because you went the wrong way down the aisle. The looking. There is always someone looking. 

They can’t know what it’s like to feel your stomach drop because someone has asked him a question and you know that there will be no reply. And they will look at him and then at you and then give up trying, thinking that you should teach that kid some manners. 

They can’t know what it’s like to use accessible toilets and have to lay your child on the dirty floor because change tables aren’t big enough. And then be glared at because your child doesn’t look disabled enough.

They can’t know that when you tell them he has had a bad time and they say “it’s a new day tomorrow” you want to tell them yes it is. And tomorrow he will still have autism and it will be an awful lot like it was today. Because these aren’t one offs we tell you about. We just don’t mention them all in case you get sick of us.

They can’t know what it’s like to have that few minutes every morning when you haven’t remembered yet. And then it hits. Like being told the news again every single day. 

They can’t know what it’s like when you spend a year showing him picture cards in exchange for a word and then that word comes. And then two. And then three. They can’t know the elation of a new food tried bringing the total to 8 things that they will eat. They can’t know the joy of meeting others in your boat. Clinging onto the sides and eachother. Because they do know. 

They can’t know. And you know too well. And there is always tomorrow. When you’ll wake up. Remember. Get out of bed and put on your game face. Because you are a warrior my darling. And tomorrow might just be the day that it’s better. 

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7 thoughts on “They Can’t Know

  1. Wow! Thanks for sharing, I rarely share my darkest moments outside my inner circle. Takes a whole lot of bravery but I guess your dealing with far bigger stuff. He’s a gorgeous soul & so lucky to have you guys as his guiding lights

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  2. Claire, I’ve followed you on Instagram for a while now. You’re boys beautiful faces make me smile instantly on days that I’m feeling dark myself. I have no words of advice, how could I? I do not live with someone with autism every day. I do have the upmost praise for you and I can just let you know that you are all amazing.

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  3. Hi there, I don’t know how you feel as I don’t have children with Autism but I can understand what you are saying and feeling. I have two nephews (brothers) with autism, they are teenagers now and I can’t help with babysitting anymore as I don’t understand what they want and they don’t understand me and you know what happens then. It really sucks and it kills me seeing my nephews and my brother and sister-in-law with their daily despair. All my family can do now is listen and support every decision they make with no judgement. I can escape Autism my brother, his wife and boys can’t. It’s one hell of a tough journey and it will suck. Keep being open about it. Kind regards Rebecca.

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  4. BEAUTIFUL words from the bottom of your soul sweetheart….well written and good luck huni…..ive watched Chloe for years and watched her cope so good luck huni xxxxxxxxxxxxxxxxxx

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