Gawkers and talkers...

I belong to an online group for parents who have children with hypotonia, along with various other illnesses. Today, there have been a lot of posts from parents who are tired, angry, and offended by others who offer inappropriate advice, or who gawk, or who make rude comments about their children.

I believe most people have the best of intentions when offering their 2-cents worth. Speaking from my own experience with Ben, however, the level of exposure to advice multiplies exponentially with every layer of illness and delay. In the past 15 months of Ben's life, he has seen a minimum of 12 doctors, and probably 20 nurses, along with a case coordinator, a nutritionist, and weekly sessions with his physical therapist and occupational therapist. Add to that grandparents, aunts and uncles, friends, acquaintances, and the occasional passer-by, and you can see how many opinions might start to add up. Unfortunately, some of this advice does come with a not-so-subtle tone of judgement that suggests we, as Ben's parents, aren't doing everything we could do for him. I can't count how many times I've heard, "Have you tried...(insert random treatments here)??" My favorite suggestions are those distant recollections of a miracle cure such as, "I think my friend's neighbor's nephew's daughter in Montana had the same thing as your son, and a little vitamin C cleared it all up. Why don't you try that??!"

As for the gawk-factor, again, I don't believe people are intentionally rude. Unfortunately, many people are not exposed to enough diversity to easily know how to handle themselves when they encounter someone who is different from themselves, be it racially, culturally, developmentally, or medically.

I think the reason that the stares and comments can be so painful is that first and foremost, our children are our children... not just our "special needs" children. When life gets so full of evaluations, medications, and operations, it seems that all other people see is what is wrong with the child. We want desperately for people to see the beautiful, courageous, funny, and happy kids that we see, and not always be reminded that there is something "different".

After all is said and done, I don't expect everyone I meet to communicate with complete empathy about Ben's situation. I believe it's also my responsibility not to over-react to the well-intentioned helpers, the uninformed tactless opinion-launchers, or the just plain rude gawkers.