Still recuperating from surgery. It is difficult to be down for the count and try to manage things from flat on my butt. One week and three days and I will be mobile again. Lots going on here, but I just couldn't muster up the energy to post. A friend had an experience yesterday, my adrenaline started flowing, and this was the result.
All of our children deserve the best medical care we can find. When the child has special needs, it is even more critical. Those of us with a high maintenance special needs child know it is necessary for our family's survival. And there's the rub... our families do not look or interact like typical families. There are an infinitesimal number of highly qualified professionals who also understand that since our families aren't created out of typical children, they will never look typical. We are ordinary people in extraordinary situations. Some of us are overweight, some of us are not socially adept, some of us are performing most of the time, some are always moving, others of us are a perfectionist or overly critical. We are imperfect people, like everyone else.
It is really discouraging to have an outstanding team of professionals lined up to treat our high maintenance special needs child, only to have one of them veer off into you and what you need. I had one tell me it was unfair to GB to keep Hope. In my world, neither helpful nor a solution. If GB's shrink spent her appointment discussing how much weight I needed to lose, that would also be neither helpful nor a solution. If my kid had cancer, everybody would be shocked at an oncologist who spent forty-five minutes telling me how much weight I need to lose or how much stress my child's cancer is putting my other children under and how I need to make different arrangements.
Our children have specials needs through no fault of theirs or ours. We are people trying to do the best we can for our kids. We do not need professional crap.