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As a final point in this series of deeper insights related to raising a handicapped child it would be this: giving up is not an option.
Saying that, I know there are really difficult situations worse than ours. Sometimes there are no good options for parents and I don’t mean to judge. In our case, we would like James to live more independently but we are a number of steps from there. If we were to try to place him in a group home right now his behavior issues would be off the charts, there would be no good outcome. He has to buy into the idea, and there are steps toward it that we have to achieve.
Focus on what you can do
We might wish we could be empty nesters now, I would love to be playing more concerts (I feel I am playing as well as I ever have!), but fact is we have to keep working with James with the goal of tracking toward a good outcome. We would prefer that day be sooner rather than later. But in the mean time I choose to focus on what I can do instead of what I can’t do. I have been able to work on this website, to write and publish some interesting publications, make CDs, etc.
Who knows how different things would have been if James were “normal?” Of course, he might have had the same autism issues even without the extra chromosome. So much is out of our hands, all we can do is just do our best and keep moving forward. Staying optimistic.
In my twitter bio I have presently the following:
Horn professor @ASU | Performer & author, enthusiastic about all things #Frenchhorn | Makes a cheese omelette for his son every morning
The last item sounds like it might be a throwaway line, but actually it is not at all. I literally make him an omelette every morning and have for now a number of years. He needs that much stability of routine as he starts his day. The only times I don’t cook an omelette are days we are not at home, at a hotel with a breakfast room.
Which brings me to this summer, I have been working on writing projects large and small, taking James places, and have inserted extra hobby time in the schedule too. Hobby time? Quitting is not an option, but also you don’t have to be hard core every day working hard every moment. If I did not have hobby outlets and interests, and my faith as well, I hate to think of how life might be. I would guess I might have burned out by now. The future we don’t know, but I chose to be optimistic.
In relation to that last thought about burning out, I have this final point. If your “hobby” is “self-improvement” you urgently need to find a real hobby.** If you don’t have any activity in your life that others would easily recognize as being a legitimate hobby, take stock and make sure to make your life more balanced and three dimensional.
** Self-improvement is not a hobby. However, a famous horn player actually stated that was their hobby in a Horn Call interview years ago. I hope they were joking, or, if not, I sincerely hope they have developed by now some real hobby.