One of the things about parenting a child or young person with additional needs is that life is never predictable. Just when you think that everything is going along quite well, out of nowhere something will happen that turns everything upside down and breaks it apart again. That this might happen on a fairly regular basis doesn’t necessarily prepare you for the next time, or give you the answers you need. It might, however, make you look ahead at what could be the light at the end of the tunnel and cause you to wonder if instead it’s a train just about to run you over!
Being disrupted is normal for additional-needs parents, it comes with the territory and even if it catches us out the one certainty to add to death and taxes is that it will happen again and again and again!
Over the years, we’ve entered into, gone through, and emerged the other side from many disruptive periods with James, our 16-year-old autistic son, who also has learning disability and epilepsy. Some of these periods have been because of big changes in his routine, such as changes at school. Some of them have been due to big changes in James himself as he has developed and grown. Hitting puberty was a very disruptive time for us all, as has been his more recent diagnosis of epilepsy, which has resulted in some significant anxiety issues for him. Sometimes the causes of the disruptive periods can be less obvious to spot, such as if he is beginning to feel a bit unwell.
As James is mostly non-verbal, it is important that we don’t ignore these disruptions, but try to work with him to understand what he is trying to communicate to us through them. It might just be that as a 16-year-old teenager his hormones are raging, or it might be that his anxiety-based stress is because how he feels when he is generally anxious is similar to how he feels when he is building up to an epileptic seizure, and he finds it hard to distinguish between the two. What matters most is that James feels safe, cared for, and is able to communicate his feelings in a way that we can understand, respond to, and help him with.
While sometimes these disruptive periods can be hard for us as parents, with the recent episodes it’s involved lots of juggling of work responsibilities for example, one thing that this does build in us is resilience.
Source: Special Needs Parenting- Key Ministry
