Today is Autism Sunday and there will be lots of posts about how awesome autism is, but for many children it can also be a daily struggle. Here one Mum shares her diary of a few weeks in the life of her 9-year old with Asperger's...
(The diary has been edited with the author's permission and some details have been changed)
As soon as he woke he said he didn't want to go to school. That he deserved the day off after the weekend he'd had. He said the school is lying, that he is under stress and is being naughty in school. He tried to bargain with me, and say that if he went in today then he could have Thursday or Monday off. But I kept going and giving him clothes and telling him when to get dressed and when to make his breakfast and I got him out the door. My only concession was that I let him take him game boy with him on the bus.
I didn't hear him the first time he called me this morning, so he went straight into anger and aggression mode. Using every swear word he could think of. I asked him what would calm him down. A day off school was his reply, but I said no. He said he'd do anything and continued to be angry and aggressive. Kept the bus waiting and left for school with no breakfast.
Today was a much better day. He called me at 6.20am. He got dressed, had breakfast, and even cleaned his teeth before going out to the bus. No anger, no angry voices, nothing. He did have trouble going to sleep though.
He woke at 5.30, but at least he seems content and even happy. I had a proper two way conversation with him over lunch and about music not computer games! After dinner I had to go out for a few hours, but he refused to go to bed for the babysitter, so was still up when I arrived home at 11pm. Tomorrow could be a bit tricky!
He called me in for a cuddle about 6am and then we slept and chatted until about 7.30am. He was on good form for most of the morning but got very angry for a few minutes when he crashed into a chair. "Why do I have to get hurt EVERY day!"
This morning he called me wanting to get up and then the doorbell rang and I told him that I had to answer it. He told me not to, and when I did, he swore at me. He seemed happy enough coming in from school but then suddenly started to tell me how much he hates school. He said that he wasn't going in tomorrow unless I went with him and asked for a meeting.
He went to school today but only because I promised to go in too. I did, but the Principal wasn't free to see me. His teacher said again that he is fine in school and his behaviour at home is just a control thing. I don't know what to think.
He was very directive this morning. "I want my hot chocolate." "Where is it?" He visited friends in the afternoon and came back very happy. I was even able to give him a hug! But when I said it was bedtime he went straight into meltdown mode with no warned at all! I got him upstairs eventually, but there was lots of swearing and him telling me that I needed to see a therapist.
Not too bad during the day, but all he did was play computer games. He got angry at bed time even though I had agreed the time with him.
I organised for him to see a friend tomorrow as he requested. But then he said he wanted to move his consoles into the living room as the telly was better in there. I said no way, and got a bit upset, asking him where did he get his sense of entitlement from? Then I checked out a game he wanted to get and had to say no as it had so much inappropriate content. He was not impressed.
Instead of being grateful that he is finally getting to see his friend after about a year, he is angry because it's only for 2 1/2 hours! He was on better form when I went to collect him and even said thank you and good bye without prompting. Then when I went shopping later he helped to bring it in without being asked :)
He came in from school after a run in with another boy who has apparently threatened to hurt him. I told him to talk to his teacher preferably when the boy is not watching. He had a mark on his hand and said his wrist hurt, which needed lots of plaster tape and Nurofen before he would use it. It seems he refused to do school work on the strength of his sore wrist and was given extra homework as a result.
The school provides lunch to stop the boys eating rubbish, but he is now refusing to eat it saying it's horrible and while I put a drink in his bag he often forgets to drink that too. So he is usually hungry and thirsty when he comes in, but getting to the point of forgetting what he is feeling. So I asked him to finish the drink in his bag, and then I made him a very late lunch and he sat in the other room on his own for about 20 minutes to calm down. Then he came into the kitchen, but it was another 55 minutes before I could get him to start the homework. It took him 45 minutes to do and I had to supervise it all, to keep him on task. After dinner he went back into the other room. About 8pm I went into him with a drink and a piece of dark chocolate. Then it's bedtime. I have to go with him while he does his teeth etc, then it's up to his bedroom. I read him a story but he kept forgetting to listen, and tried to engage me in conversation about his games instead. Then I said good night and sat on the end of the bed, waiting for him to go to sleep, so he is afraid of the dark. This can take from 10 minutes to one and a half hours.
I had to wake him up at 6.30, cant leave him any later or he gets angry. I only had to wait 10 minutes this morning for him to get up though.
He came home in a bad mood from school, and refused to see his Dad following a half hour of arguing. He seemed especially anxious and demanded that I go upstairs with him several times while he went to the toilet. Once again he rejected the first dinner that I cooked so I had to make a second one. But he was asleep by 9.45pm, which was good!
Now he needs me to tell him when I go to have a shower! Because he gets scared if I don't answer when he calls, and he can't find me. Got angry this morning and didn't want to go to school. He said "Fix it, or I'm leaving."
He says that he is 'eternally depressed' and wants to stop eating and drinking, and not go to school, or so he says. But he says he has to eat/drink to stop me taking him to the hospital. It seems he saw something on YouTube.
I watched the YouTube video and I still don't know why he is so upset. This morning he is still saying that he will not eat today. And I have school refusal to deal with again. An hour of screaming this morning as he tried to get me to go into the school and tell them how terrible it is :(
He's still trying for school refusal and threatening suicide in the morning :( He chose to go to his Dad's this evening, and when he came home he told me that he wanted to call me but his Dad wouldn't let him. He said that if he decides to live he doesnt want to see his Dad again either.
A massive meltdown before school. I got hurt. He doesn't want to go to school. But he did and I promised to ring his psychiatrist to see if I could get some help. I really hope that I can.
This diary did result in help from local autism services and things improved in the following months.