Lying in bed waiting for it all to start, the noise, the demands; ‘make me breakfast’, the ‘no you can’t wear that suit to the park’, or ‘yes we do have to go out today’, ‘yes you do have to eat’, ‘yes you do need to clean your teeth, ‘no you can’t have computer time’. I have to remind myself that it’s part of his condition, the impulsivity, the rigidity of thought, needing things to be a certain way, the demands, arguments and frustration. For those of you unfamiliar, autism or ASD can create a number of patterns that a person with autism may not be able to control or even manage sometimes. It does mean that the person may struggle to take in information from the environment around them, or simply see things in a different way. As ASD is a syndrome with wide variation, that means it’s different for everyone, there is no one presentation. Essentially it affects social communication as well, so the person may miss social cues, may not understand other points of view and may miss subtleties of language. All wrapped in a nice little package.
ASD is classed as a neurological condition so it affects the wiring of the brain. It can also coincide with many other conditions, which is why no two people with ASD are the same. It may be obvious or subtle depending on the person. In my case, people who don’t know him very well, will not see beyond the rude behaviour. It’s like a barrier for him in every way, in creating relationships, in school and to his own sense of calm. I see him struggling with it and trapped in it sometimes and my heart breaks for him. Other times I am worn down by it and that’s when my own frustration kicks in and I just want some peace and quiet. Essentially it takes time to help mould and shape social behaviour for someone it does not come naturally for, and each day we are focused on helping him learn how to do that. Obviously some days are better than others.
Coming back to my original thought, I am waiting for the day to start, and instead of being drawn into a thousand arguments about tiny things, I will ride it out. I will use my self-talk to step back and look for the causes underlying his behaviour. I will notice the anxiety and the worries he has about all the small things that feel like really big things to him. I will act with compassion and kindness and try and help him notice and learn what is going on for him. Most of all I am going to take all the small moments in between where I see my son without his condition, where he tells jokes, where he asks interesting questions, where he laughs, plays, hugs me and I delight in him being his own little person with a quirky take on the world.
Today I’m going to choose the latter and not try to predict his behaviour and all the struggles we’re going to face. Just one moment at a time. After all, anticipating all the negative things that might happen won’t help either of us, and at the end of the day I have to steer this ship, so it may as well be to calm waters. Learning how to not buy into those predictive thoughts is a skill that all parents and all people can learn. It stems from mindfulness, and in subsequent posts I will talk about that in more detail.
Being a parent of a child with a disability is tough, and I pay respect to everyone out there doing it much worse than me. It’s not a glamorous cause, but you are doing your best to help your little person be part of this big world. I am sharing part of my story with you to hopefully let you know you are not alone, and to help those not in this situation to let go of judgments a little, and the ‘I could do it better’ thoughts.