A journey through grief with autism.

Alan Greenwell

3-Minute Read


This weekend has been terrible for sleep. Tam has soldiered on with about 4 hours sleep total. It’s Sunday evening and I have been trying to talk to him about sleep and it has degraded into him attacking me. I have a bit mark on my hand and a cut on my nose. Everything I have done to calm him down has failed. I have him in bed with a red led strip under the bed and he is crying and tossing around. It breaks my heart. He has school tomorrow and the lack of sleep worries me as it can affect his behaviour.

That is probably a picture that a lot of parents with autistic kids understand. It’s a real picture that on nights like tonight is tough to cope with. Right now I have my little lad (well little in my eyes) throwing himself around in his bedroom with me sitting in the door way trying to tell him it’s OK and he just needs to stop and relax.

The medication I have to help Tam sleep has stopped working. All I can do is keep at this until this phase of Tams behaviour changes.

Part of the problem is that in Tams eyes he saw his mummy go to sleep and she has not come back. For long enough he thought we had left her in hospital until I took him back to the ward to see she was not there. I think that it’s not Tam sleeping that is the issue. I think that Tam does not want me to sleep and go away like mammy.

I have sat with him and tried to explain, drawn cartoons, I have even tested it out. One night I made out that I had fallen asleep and Tam rushed over to me and shook me shouting ‘daddy daddy’ and crying. It took a couple of hours for him to settle down. He did not sleep that night or leave my side. He was very anxious most of the next day. You see when Tam does sleep it is because he is absolutely shattered and physically cannot stay awake. I am always awake when he is awake and most of the time awake when he wakes up. Needless to say I will not repeat that test again.

He most definitely has this incorrect understanding that mammy slept and went away. I cannot get the idea of death being a very different situation to sleep into his understanding of the world.

I feel like I am running out of ideas as far as getting Tam to sleep. It is worrying because Tams physical health suffers when he does not sleep. As does mine.

Update: its just after 4am and Tam has been quiet for the last 30 minutes or so. At least he is resting now. I think sleep will come soon and once he is asleep I will sleep. Got to be up in a couple of hours.

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