A journey through grief with autism.


Alan Greenwell

4-Minute Read


Its 5am and another night of Tam being petrified to sleep. He seems to be having terrible nightmares which lead to him screaming while he is asleep and wetting the bed. He is inconsolable when I wake him and sobs and will not allow me to hug him or even touch him. I will have that to deal with when he runs out of steam. Right now he is absolutely shattered and fighting sleep like a trooper.

I understand him being scared of sleep if he is having such nightmares and have to support him through this. We had made so much progress and this is a bump in the road of grief.

He is jammed up against me as I write this and if I move away he follows me and needs a tight hug. I have not been more than a few centimetres away from him since 11 am yesterday. Grief and nightmares are hitting him hard.

I do my best to reach him. I keep my tone of voice positive, I accept his separation anxiety and work with him to reduce it. I praise all things he does to be more content. I use a neutral voice when I am telling him not to do something he shouldn’t or to ask him to be quiet.

I tell him that we need to go to bed and sleep. I try to bribe him with going to the pictures and he talks about it all day. I tell him we cannot go to the pictures if we don’t go to sleep. None of it works.

If I put him to bed and stay with him he just does not settle and becomes more disregulated until it becomes violent. I do not like him being violent so I quit before we get there. That might seem like bad parenting but when Tam lashes out it is unrestrained and being scratched, kicked and punched by your son because he is scared to sleep is not worth it. Better to call a halt and keep things calm. We will get past this.

Part of me blames myself for giving in and putting a film on with the lights off. Maybe the atmosphere when we do this gives Tam reason to kick off knowing that he is getting a prize of time watching a film with dad. But I see the terror on his face when he is tired and falling asleep and kicks himself into action to fight the sleep and the terror that follows. Using the word TERROR might feel melodramatic and full of drama but honestly it is terror on his face when he realises that he is falling asleep. It breaks my heart to see the look in his eyes and the stress on his beautiful face.

I have tried to put myself in his place. Imagine I had seen my dad giving CPR to my mam when I was 10 years old. Then we arrive in hospital and all kinds of things are happening that I had not experienced before. And finally I never see my mam again. For a child that can communicate and ask questions and listen to answers it would be hard enough. It would have scared me for life and I think I would have been a very different person. Being brought up by my Dad would have definitely made me a different person.

I cannot quite remember how old I was but my mam went into hospital to have her gall bladder removed and I had to stay with an aunt. I am still scared by that. I cannot imagine how scared I would have been if she never came home again.

Time will heal both of us. We will always have a huge hole in our lives. We will be very different from the alternates if Bev was still alive. But we will heal and Tam will sleep without nightmares, well at least not this often.

So the sun is coming up and its time to make Tam something to eat. One of the weird things of being up all night is that you have to treat the time as if its a normal day and eat and drink. Just because you should be sleeping does not mean that food and sustenance are not needed.

Hope you all slept well and shame you missed the peachy sunrise.

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