A journey through grief with autism.

Alan Greenwell

4-Minute Read


One of the biggest steps I have taken with Tam is putting him into respite. So far it has been 1 or 2 nights in a lovely place that is especially for kids with autism. The staff are fantastic and do an excellent job of helping the kids to adjust to a new environment. I really could not ask for more from them.

The process of Tam going to respite has been a slow and careful approach to getting him comfortable with the centre and the staff. I have to admit at the beginning it was slow and a little frustrating but sitting hear now at 5am with Tam at the respite centre (and I have had a good nights sleep) I realise that the pace was right and the steps we took were right.

Now all of the said its not perfect but that is nothing to do with the centre or the staff, its more to do with Tam. By saying its more to do with Tam take it that Tam and me are an inseparable entity. We affect each other so much. If he is upset I am, if I am down he is down.

This morning is the end of a 2 day stay at the centre. Its only his second 2 day stay at respite and he has had just over 10 nights there this year. When I told Tam he was staying at respite he became distant for a few minutes and sobbed. He absolutely sobbed. My heart broke. I explained that it was an adventure and he would be going to the park he loves. Nothing calmed him. I dropped him off at the respite centre and he was still crying but he went in. I am came home. My heart was powering like crazy. I got a call that he had been upset for a while but went to the park and was laughing and giggling.

Now one of the most worrying part of his stays at respite is that he won’t eat. I have sent his favourite foods in with him but he ignores them. Now my little lad still has a lot of puppy fat so I am not really worried about him not eating while at respite as long as he drinks.

After his first night in respite I went to pick him up to go to school and he was standing at the door waiting with his overnight bag. I explained to him that he had one more sleep and he needed to leave his bag. A squadron of Royal Marines could not have taken his bag off him and it was easier and less upsetting to take his bag with us. Off he went to school.

That afternoon, I picked him up and explained he had another sleep at respite and the sobbing and tears started again. Now earlier that day I had drawn a line that if he did not eat at school I would take him home. If he had eaten then respite. He had eaten, not much, but he had eaten.

Same process, we got to respite and he went in still crying carrying his bag.

Respite is important for both of us. I need to get rest and some solid sleep to recharge my batteries. In a typical week at the moment I will follow Tams routine of at least 2 nights with no sleep (i have to sleep during the day). Plus loads of other little things that can be difficult. Second part of respite is for Tam to get used to having other people around him. He will potentially need assistance for the rest of his life, so right now is the easiest time for him to get used to this situation.

So if someone was looking at putting there child into respite I would say, listen to the people in the respite centre. They are the experts in acclimatising kids into the service and making them feel comfortable. Then I would tell them to listen to themselves as they are the experts in their child. Finally be strong. Oh, last thing, when they are in respite don’t expect much of themselves for the first 10 visits, it will be very hard.

A couple of hours and I will be picking up Tam. I hope that at least he had a good nights sleep.

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