I have had to think lately about how much stress is put on our family and social relationships because of the issues that PWS brings. Relationships can be hard enough under the best of circumstances. Add the stress of all the PWS issues we deal with, the responsibilities of family, job, community, and even self, and it is quite a lot to deal with for any and all of us. What's more, for the most part, we tend to deal with this in silence. We keep what is in the family in the family. From experience we know that, except for those precious few souls who patiently hang in there with us, most people glaze over when you try to talk to them about your life. After a few glazings, we learn to keep it to ourselves whenever we can. So, sometimes, the pressure builds up within the family and the bonds there are not always strong enough to withhold this pressure.
I have had this on my mind lately because of what we have seen with some families here. For the last several years, there have been three other couples who we have been, at least loosely, involved with, all families of children with special needs (not PWS). Over the last year, we have seen all three of these families go through divorces. It's chilling to me to see how a once-functional family has been shaken to the core, at least in part by the furor of a diagnosis. This is not to say that the diagnosis caused the divorces, just that it was an important factor.
When a family receives a diagnosis like PWS, it's an emotional tsunami and when the waves are gone, some of us pick up and rebuild and others never do. Others put their houses back together, but they are not strong enough to withstand the following storms, even though they don't compare to the original.
I realize that all of this is not about alternative approaches to PWS, but when I think about it, maybe it is. I believe that the single most important factor in the progress of a child with PWS, or any child for that matter, but for our purposes here, a child with PWS, is a strong, stable, supportive home life. That doesn't mean it has to be with the traditional mom, dad, and 2.2 children. It does mean that whatever the structure of our homes looks like, stability has to be our top priority. In order to provide stability for our children, we have to have it for ourselves. We cannot give what we do not have.
What I'm writing to say is that we all need to be mindful of our stress levels and try to find ways to reduce it in whatever ways we can. The cost for not doing this is way too high. The last statistics I read said that the divorce rate in families with children with special needs was unbelievably high. We know what a toll that stress takes on our health. Let's commit ourselves to keeping a close watch on our stress levels and doing whatever we can to keep the pressure from destroying our marriages, our relationships, and our health. We tend to go along on auto-pilot assuming that if we just don't think about a problem, it will not come back to bite us. Knowing the fault of that logic, we have to remain aware of those things that are stress-producing and of the effect they are having on us and all those we love.
I'm sure nobody else needed this essay on stress management and relationships, but I just needed to say it. I guess it's one of the ways that I handle my own stress.
It might be interesting to talk about ways that we as parents manage our stress. I know I'd like to hear about it. Any takers?