The challenges of being a dad to a child with autism
By Carl Rice
First of all, I am not just a dad to a child with autism, we are a family and Chloe, Oliver, Charlie, Hannah and myself all face many challenges daily. Luckily we have an amazing support network as a family of five: we are a team, and we need to be a team.
The most difficult thing is fear of the unknown. Currently Oliver is non-verbal – we hope this will change but it might not. He is completely socially unaware. He will run off if he is unsupervised, completely unaware of any dangers, physical danger and dangers with strangers. He will also just run out into a road of heavy traffic when he is outside and he needs permanent restraint and hyper-vigilance.
Oliver’s autism places restrictions on what we can do as a family unit. It takes a ridiculous amount planning and preparation to do anything together and there is the chance that something can stop before it has even started. A camping trip means heads raised like meerkats, a hyper state of alert, and dynamic risk assessing! No matter who offers to help, it is sometimes so hard to place trust in someone as you can never be sure that they will give the same level of alertness as you would yourself.
It is tiring until bedtime and that’s when the other stuff starts. Oliver is a terrible sleeper. We use medication to help him get to sleep, he will not go off until after midnight if he doesn’t have it. Now he will wake between around 1am and 4am and will stay awake in a quite hyper state of mind. To make sure that he is safe and doesn’t wake everyone we have to stay in the same room with him which means that one of us is awake for that time too – depending on the rota!
Oliver’s autism affects everyone in the family. His brother and sister are already aware of things we might not be able to do as a family BUT they also take care of us as parents. They will help any way they can during a meltdown and afterwards come to us to check that we are ok. It isn’t something that they should worry about but it is there right in front of them and we can’t do anything about it. It is a lot of responsibility for kids at such a young age, it is confusing for them, frustrating and it is something that we worry about. We try and do whatever we can to keep things as ‘normal’ as possible for them.
The main thing we try not to think about is the future. Sometimes you can’t stop the thoughts. What will Oliver do when we’re not here? Who will care for him? Who will help him? Will people take advantage of him? He is just so vulnerable. It shouldn’t be the responsibility of Charlie and Chloe to look after and care for Oliver, they should be able to have their own lives. But judging by their current compassion and caring natures, they will always take care of him. The uncertainty about the future is scary and upsetting, it puts your stomach in knots and so it is best to concentrate on today and tomorrow rather than in another 10 or 15 years.