Some days, only some, the difficulties that our son experiences seem to extend their reach to engulf others.
Today, as I walked alone through the park while our son was having a coffee brunch at the social lounge he attends, I was thinking about the report we received recently from his Psychiatrist. Painful to read, it suggested that he was losing interest and enthusiasm of life, fearful of virtually everything and incapable of making the choices that would be expected of someone of his age, trying to establish himself in this world.
His Psychiatrist drew attention to how his outlook is worsening and that activities he was once involved with, hold no interest for him now.
Our dog, Bronte, looks at me. Deep dark eyes that seem to understand my thoughts but can offer nothing but the power of distraction as she wants to fetch and run after her ball.
As a father, I had once thought about kicking a football together, playing catch, casting a line fishing, maybe even walking together coast to coast, the Pennine Way or three peaks. Even watching him finding a partner. We realised early on this was never going to happen and that our time together would be focused on other, more basic things. We have known from the time he was born, that his life expectancy will be shortened. After thirty years, he has already surpassed medical expectations, and we have blessed every day. Reading this report, one of several that have identified his increasing difficulties, I wonder as I walk alongside the boating lake, are we heading into a new phase in his life, one that is not as fulfilling as his previous challenging years.
Am I up to it? can I effectively support our son, my wife, with continued enthusiasm and excitement, when it seems everything we do for him is met with disinterest and refusal, turning increasingly uncommunicative. Maintaining self motivation is essential, creating new ideas to stimulate, being prepared to be flexible with these plans and to brush off rejection and complaint. They don’t matter.
We complete our walk and return to the social lounge to collect our son. I meet with the service providers who tell me “he was fine, he’s interacted and enjoyed the company around him” ….. looking though the window, I see our son sat at a table, alone. His head bowed and face expressionless hands on his lap and nothing like interaction going on. As I enter the room, there is no response until I sit directly in front of him and quietly say, “lets go home son” and I get the first response as his head raises marginally and sad eyes look towards me. He moves to get out of his chair and we head home. The remaining hours of the day were quiet and unresponsive. The words of his Psychiatrist continue to haunt me and I can only take comfort in the fact that my presence does appear to reassure and comfort him and at times we do achieve good things together.
What the future holds for us all I do not know, I’m certain we will be walking parks, sometimes together, sometimes alone.