Every now and then a time will come where autism and me don't really get along. I'm quite a laid back person and can deal with the day to day anxieties that come along hand in hand with my child with autism, but occasionally there will be an odd day where I could easily punch autism right in the face. I was faced with one of those days this week.
This week we had 'onesie' and 'crazy hair' day at school. A fun day organised by some older school children to raise some money for charity. At least it should be a fun day. But for some children days like this are not so fun. These are the days where I hate autism. The day started out well. L had picked what onesie he was wearing to school. He didn't want his hair made 'crazy' - no surprises there, he has never liked having his hair touched. Had his usual bath, got dressed in some casual clothes, had breakfast and then it was time to go to school....so time to put his onesie on. I could see his face change but I stayed with it, reminding him of the fun day and how all the boys and girls would have their onesies on at school. He started to put it on , it was almost all the way on and then his face changed again. I could see the upset starting, he started to cry, he didn't want to wear it. He wanted his school clothes on. Then everything was wrong - he didn't want a snack for school, didn't want any lunch, he didn't want any juice, he couldn't go to school - I could see his mind going a million miles an hour, trying to figure out what was happening that day and why he was wearing something different to his usual school clothes. I quickly took the onesie off and ran upstairs and brought down school trousers and a school jumper and quickly put them on him. Once in the car he calmed down but I could see the anxiety etched on his little face. He kept saying he couldn't go to school but I managed to distract him and got a few smiles before I dropped him off. Then it was my turn to feel anxious. I felt nervous as I drove off, worrying about my little man, hoping that he settled into the day. This little boy with his school clothes on in amongst all the onesies. Driving away thinking of how much I hate autism. How a day that should be fun for a 5 year old boy was actually full of anxiety, stress and worry. And now I was having to go to work full of the same anxiety, stress and worry. On this day I hated autism and how it controls L.
How it affects so many little parts of all of our lives. How I have to get L dressed the same way every day (left sock first, then right, pants, trousers, vest then top). How he likes his food served on the same plate, how he likes to wear tops with a pocket but with no buttons. How he likes me to make his breakfast but if he has toast with sausages and beans his dad has to make it. If we eat out and he has sausages and chips he must have 2 sausages or he won't eat any of it. How all seat belts must be fastened in the car at all times. When we are in the supermarket we must always use the self service check out (I keep the big shop for when L is at school.) How the washing machine door must always be open. How I can never hoover if L is at home. How I have to drive the same way even if it means being stuck in traffic and taking longer to get home. How he has to be first to walk out the door when we go out. How he only likes the buttons done up on his jacket, never the zip. How I have to always buy him the same shoes. How every day whilst driving to school I have to take a slight detour so he can see a No Entry sign. How I have to read the same bedtime story night after night after night after night. I could go on.
All of these things are fine. I'm so used to them and they are harmless. I do them on autopilot without even thinking. They keep L happy which keeps all of us happy. But when things cause him to get upset, that's not ok and that's when I hate autism. That's when autism sucks. But even though it might win a small battle now and then, it will never win the war. I will make sure of it.
