A journey through grief with autism.

Alan Greenwell

5-Minute Read


Tam went back to school today. He was real confused this morning. After thousands of times asking “going to school tomorrow” he was getting ready for school. It caused a little bit of panic as he had to get some things in place ready for him leaving. All weird stuff like his star projector has to be facing a certain way in his bedroom. He has to use his iPad and Kindle to watch particular things in the morning. He has to have his chair sideways when he gets his breakfast. All weird stuff but it makes him happy.

Off to school we went, no drama, no complaints, eager to get out of the taxi when we get there. Out of the taxi lots of new faces around him and away he went without any trepidation. So proud of his resilience in these situations. He loves school so much.

All of the worry was wasted energy. We did it, we got back to school with no fuss or drama.

Homeward bound and thoughts of Bev, so many wishes and no chance of them coming true.

I spent the next few hours being busy getting tidied up, put some music on, totally random but “The Specials” is great music to keep the energy level high. If I stopped I knew I would have grief dropping on me hard so I cracked on. I needed to get tidy again.

One part of today that I had decided was important was that I was going to be good to myself. So I set myself some simple tasks and got on with them, then I sat down with a cup of tea and some toast. The grief settled heavy, grief for my little boy losing his mother who would have been fussing so much today, grief for my soul for losing the love of my life. Grief for the fact that me and Tam would never be the same again and would always have a huge hole in our lives that will never be filled.

Then when all of that started to wash away I started to think about the holiday and whether they had been a success or not. Now based on the plans I had for us, the answer is that they were a massive failure. However, when looking at the place we started the holiday and how we ended the holiday I started to realise that we had had some good success’s.

For one Tam started the holidays with lots of health problems, over the holidays I think that Tam is physically more healthy. His mental health is still not great, he still has major issues with sleeping. Bad sleep for Tam is 3 days and nights with NO SLEEP. Good is 2-6 hours sleep. All of the shades of grey in between which can include him getting a bit violent. All of this comes to down to Tams perspective of seeing his mammy fall asleep and not coming back. He is scared and sometimes terrified to sleep. It is something I have to approach from his point of view and also make every effort to help him with.

Oh, I forgot we went through chicken pox as well during the holidays.

Outings were few and far between, attempts were plenty but all but a few where failures. Looking now at what happened maybe it was more important for Tam to just be himself and spend time together. I know he feeds off how I am feeling and that is something we both have to work on. Spontaneity worked best over the holidays. Anything planned did not work well. Sometimes because of sleep, sometimes because of illness, sometimes because I was not feeling particularly emotionally strong and Tam picked up on it.

An example was that for a few days we talked about getting the train to Edinburgh Zoo. Tam likes the Zoo and train rides. All went well, Tam slept for about 4 hours and I had enough sleep to feel safe and not be worried that we ended up in Aberdeen. So off to the train station on the Metro. All good. We arrived at the train station tickets in hand and Tam had a massive meltdown. After about an hour I managed to put him over my shoulder and take him home. Its all he wanted to do, “Go home”.

Looking at it then it was upsetting. I could not work out what went wrong. What had I done wrong. The planning, making food for the train and zoo was all done with no hitch, he seemed all up for it and something went wrong. The cost of the tickets was not the upsetting part. The upsetting part was that the only way I could help my boy was to take him home.

Now I look at it and all think is that we tried. We were both safe and I was able to bring him down from his meltdown and do what he needed, take him home.

Tam had a good day at school. That is all that matters right now. Tam had a good day at school.

Thanks for reading

Alan and Tam

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