“The problems are not the person.” Chris Bonnello, Underdogs
Welcome to my blog and my first post. I’ve been thinking about writing a blog for a while now but didn’t know what people might be interested in or find helpful. So I asked a good friend and colleague and she suggested I write my personal experiences of living with an autistic teenager.
So, I thought about what aspect in particular other people may identify with. I realized that life ticks along beautifully at home when, as a family, we can all follow our own interests, needs and rhythms. But, things become tricky when external forces come into play, when certain events and expectations outside our family come barging in. This is what I find most challenging and what I thought other parents may also be experiencing.
So, I’m going to share my feelings, challenges and any insights into how I cope (or don’t) with the demands and expectations of others.
This first blog is about starting work but it feels similar to all the experiences we had of starting school and college (and we had many!)
My son is now 17. He is autistic with a PDA profile and I suspect has ADHD but this has never been diagnosed. His passion is gaming and will choose this over most other activities. Like lots of teenagers, he likes to stay up late and wake up late. However, my son has taken this to the next level and his sleep pattern has reversed; he goes to sleep around 5am and will wake around 3pm. My husband and I work really hard to allow my son to do what he needs to do to feel calm, regulated, understood and accepted, which includes gaming as much as he wants and sleeping when he needs. (I think gaming and sleep will make a good future blog post-watch this space).
So, when there are no external forces at play, we live in harmony. We manage to get our needs met and our feelings respected.
My son was home schooled for many years of his life (after trying many educational provisions which couldn’t meet his needs-another blog post me thinks!). He achieved top grades for his GCSE’s, having taught himself, and decided that he wanted to start work, through an apprenticeship.
And so began the external demands which for anyone with autism, PDA and/or ADHD can be a nightmare. Our calm, harmonious home life has been shattered by what everyone expects my son to do, what most children can do without much difficulty-get up in the morning (my son is usually just going to sleep at this time), navigate the bus journey, organize himself, make sure he has the clothes he wants to wear, sequence tasks, interact with other people, problem solve, listen to people talking all day long, deal with constant demands, deal with boredom, understand a timetable, deal with anxiety and panic attacks, remember to eat and drink, and the list goes on.
My husband and I can help him with certain things; we drive him to work and back everyday, we make him his breakfast and packed lunch, we pack his bag. But there are some things we can’t help him with and the most challenging for me is his sleep and trying to get this into a routine. I can’t make him go to bed at a suitable time (however hard I try) and I really struggle to wake him. He’s going to work exhausted and I suspect he wont be able to continue as he’s too tired to focus.
But, for my son, a routine of any sort is almost impossible to comprehend. The idea of slowly getting his sleep into a schedule by going to bed an hour earlier each day, is ridiculous from his point of view. He thinks he can cheat his body into doing what he wants. He thinks he will simply go to bed at a suitable time the night before work and wake up when he needs to, after a lovely rested sleep. His mind might think this but his body won’t play ball and he gets angry with himself for not being able to make his body do what he wants. Unfortunately, my son also doesn’t learn from his mistakes, but rather somehow blames me for them, so the pattern continues.
What have I learnt from this? I’ve learnt that I find it really difficult to be okay when there is an external force which is making unrealistic demands on my son. I just want to shut off the outside world and continue as we are. I’ve learnt that trying to control the uncontrollable is extremely stressful and of course a waste of precious energy and resources. I’ve learnt that I’m not sure about the line between helping my son in any way I can and overhelping him so he doesn’t learn to help himself.
I know that the most important thing I can do is love him unconditionally, support him in any way he needs, to hold the space for his emotions and to listen without judgement or advice. I know my son needs to feel loved, worthy and safe. I know all of this but can’t always do it. My own anxieties and desire to control and make everything okay get in the way. I want to see my son succeed. I know he is bright, funny and kind but I know others can’t see this because he is putting all his energy into staying awake and surviving the day. I know that this is his choice and he has to try many things before he understand himself and what suits his ways of thinking and being. But this is really hard if you don’t follow the mainstream, how do you find out if you are forging your own, unique path?
It’s at times like these that I need support from others who understand, who can do for me what I need to do for my son. Find these people in your life, cherish them and ask them for help. It’s too difficult to do this on your own.