Living in an autism bubble

When you get the diagnosis for your child, the world can suddenly become a very frightening often lonely place. Nothing will ever be the same again. When we got a diagnosis for Sam and for quite a long time afterwards; every screaming child I looked at for signs every adult I saw wearing headphones I thought…

Learning to cope with the new world order is something that takes time and a lot of effort. If it’s scary for me, is it scary for Sam? He is pre-verbal. A term I’ve started using since he doesn’t ‘talk’ but he has some words. And since he doesn’t talk he can’t tell me if certain ways he’s feeling upset him or make him feel frightened. I don’t know so I interpret. I think it’s just in the moment things that upset Sam, the after effects, the very very loud screams I think are his way of processing. It’s very annoying, often upsetting as I can only cope with that level of screaming before I want to scream or cry myself, but until he can communicate with me in a different way we probably have to suck it up. We are working with some specialists to get to the root of why the scream, he’s only been doing it about three months but I think it might be a while until we know the why’s and are able to work on a solution.

So living in the autism bubble is challenging as you already know. Either from experience or from knowing me, knowing Sam but it is equally, if not more rewarding.

When they try a new food after only eating two or three things is the best feeling ever. When they come out with a new word, or start humming a song. I can sing a song to Sam and he will fill in the last word. I can sing the alphabet and he will sometimes add the sound for a letter in the right place. If he gives me a spontaneous kiss or the one time he tried (pretty successfully) to put his pyjamas on himself. When he plays organically with his brother. All these things and more make my heart physically swell. I swear I’ve felt it!! These are the things that living in an autism bubble all the more worthwhile. It is so very hard at times but once you get over the initial shock that your child’s way of life isn’t going to be how you thought, they are so much more than that diagnosis, what I get from Sam when I get it is worth all of the challenges put together. 💙

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