A journey through grief with autism.

Alan Greenwell

4-Minute Read


On any day of the week when Tam comes in from school he follows a very prescribed path of tasks and objectives.

First he gives me his coat, I get eye contact and he is off and getting his iPad. Next he strips down to his pants and after a few minutes of getting what he wants playing on his iPad he picks his clothes up and puts them in the washing machine. God help me if it is running or just finished a cycle and I have forgotten to empty it. Its an immediate meltdown.

Next he asks for milk and he get snuggled on the sofa feet in the air, iPad propped between his knees and drinks his milk. All is calm for about 20 minutes.

After the calm things stay calm but the organisation begins. If I am not seated in the right place or I am pottering around Tam will come and get me and place me in the right place (he makes me sit where Bev used to sit). Then comes the blinds, he pulls the blinds down and switches the lights on. First the little desk light and then the main lights. At this point he gives a little tell about what he is feeling. If he dims the lights its going to be a quiet night. The amount of dimming can tell loads of stories. If the light is turned on, dimmed and then off with only the desk light left on then I know Tam is going to be ill.

Out of what I have described so far the only thing that makes Tam anxious is if he cannot get me to stay seated or if I get a phone call during this time. If either of those things happen then we enter a dis-regulated state for a couple of hours. So I have to make sure I have things all ready for my incarceration.

Tam at this point settles and has about an hour of iPad time. He is happy and content during this time as long as everything is in the right place.

Now I ask you a little favour. Just put yourself in a seat in your living room. Imagine the curtains or blinds drawn, it does not matter if its damp and grey or a beautiful blue sky, the blinds are closed. You have artificial light switched on and you cannot leave that seat for an hour. Multiply that by five and then by the 40 weeks or whatever it is for a school year. The consequences of not maintaining that are pain for your child. Ok, now relax.

Now in recent weeks there has been an addition to this regime. About 8pm Tam will pull up the blinds like the night is over, switch the lights off and ask for a snack. So now from having the outside world and light shut out we are plunged into darkness. Over the past few weeks I have learned that this is Tam telling me he does not want to go to bed and he is ready to get ready and go to school.

Tonight is the first night I have not pushed the bedtime process. All I have done is talk to him about sleep and after sleep is school and yes he is going to assembly. All I got back was tears and “scared to sleep”. At the point he told me that he looked honestly terrified. I managed to calms him down by making a nest on the sofa beside me and that where he is right now. Head rested against my ribs and once again chilled out watching Alvin & the Chipmunks. Apart from the glow of the laptop screen and iPad we are in darkness. He looks so beautiful in the iPad light.

So we have another long night. I will gently ask him about going to bed, and will test the waters carefully, but I will not push it as it is not worth the scratches, kicks and bites that I will receive by pushing him to go to bed.

If tonight follows the trend of the past weeks I will be carrying him to bed sometime between 4 and 6am. I will then be waking him at 8am and getting him ready for school. By the time we are pulling into school he will be trying to get out of the taxi and running into school with a big smile. I don’t know how he does it.

Without the ability and language to be able to talk to Tam I cannot know for sure what is going on inside his complicated head. All I know is that this set of actions and his scared to sleep started on Bev’s birthday, it has got worse in the last week and when I push it for Tam to go to bed it becomes what I can only describe as violent. So for now it is a situation that will exist until it stops.

Sleep well and dream nice dreams,

Alan & Tam

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