Posted in autism

The not so good things about autism.

I’m tired, yet again Z is awake I’ve not been to bed it’s 2am. The less sleep he gets the less he needs the wilder he gets we have a vicious circle. He fell asleep last night at 5.30 woke at 8 went back around 12 up for 7.30. He’s tired, I don’t know if he’s unwell he’s crying but he’s tired. He’s falling asleep and waking himself up, then laughing and babbling. 

But of course he’s clever so that’s bound to take away all the negative stuff right, wrong. 

I hate the fact that I’m so tired, when I’m tired I’m horrible, my patience goes and I shout. I feel guilty then that all I do is shout because he can’t help the fact that he don’t need as much sleep as his mother with her dodgy underactive thyroid. I don’t do 2 am bed times ever not even after a drink. It’s the lack of sleep is I think the hardest, the knowing I’ll be going about my day on 4 hours sleep, the patience I’m not going to have. The guilt I’ll feel for not having patience to deal with the crying when he comes home from school. Yup he’s going to school, I have work. 

I struggle when I don’t know what he wants, when I can’t cater to his needs because I don’t know what those needs are. He can’t tell me what’s wrong or what he wants not like your typical four year old. He can walk to the bathroom and I’ll know he wants water. But when he’s crying and stamping his feet is he unwell or just crying because he don’t want to sleep? I was getting good at the signs and symptoms of a ear infection but the last one caught me out. Again he’s laying down but waking himself up,does he have a ear infection? Does he have a sore throat or has he just got a cold and feeling sorry for himself? I hate not being able to know. 

 When your taking your four year old out he looks four but some part of him mentally are still two, he needs constant supervision, he sees no danger, he doesn’t understand why he can’t do what he wants to do. Why can’t he run everywhere? Why when a loud car passes he throws himself on the floor, regardless if it’s the road or pavement. 

Another is the routine, yes we all like routine but the fact that we can’t change a room around, we could but it’s not worth the unsettlement it will cause. We can’t really be spontaneous and head out for food one evening as it has to be someplace Z has been before, we need number and letters, his iPad and headphones. We can’t move the car, because then that starts the next day off badly if it’s in the wrong place. 

Food. I know not all children with autism are fussy eaters but Z is, I wish he would eat anything and everything but for now we have to stick to the same things, he will try something new when he wants to, everything on his terms. We’re back to a short selection of food.

Suppose it all goes back to needs, Z’s needs are higher than your average two year old. Things like getting dressed, changing nappies, doing everything for him. Finding shoes, putting them on him, it really is like having a giant baby. A strong baby when he starts kicking off. 

Others complain their children weren’t babies long enough Z has been a baby for four years. With him being so small born he was a baby baby for a long time, he may have grown but it’s still like looking after a baby. I still don’t know what’s the matter when he cries, I’m still is it is he hungry ? Is it wind? I’m still playing that guessing game at 2 am in the morning. 

Ok, I may laugh and joke that at least I’m not getting the back chat off a 4 year old that everyone else seems to be getting, but if happily take the back chat for a nights sleep!  Yes, I’ve thought of medicating him, but it only helps put him to sleep, not keep him asleep, at least I know when he’s up 2am he goes back by 5 , would medication stop that? 

Author:

first time mother, first time blogger

4 thoughts on “The not so good things about autism.

    1. Thank you. I’ve tried to be honest throughout, I think people see it as plain sailing when in reality it’s far from it. It is hard, some weeks the bad out weigh the good but mostly it’s not that bad. I know there’s others worse off than we are!

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