The Elephant in the Room

There have been a few things that I wanted to blog about lately. Barb wrote a nice piece about being transplanted and how it is hard to grow new roots, which inspired me. But honestly, as eloquent as anything I wrote in my head might have been, I think I've discussed that to death.

Then there was a series of events that inspired me to want to talk about whiny people and wanting what you've got, rather than getting what you want. But I decided I'd probably unintentionally piss off everyone I know because they'd think it was about them. Because we all have a tendency to overlook the big picture when we are hyper-focused on the teeny tiny crap. And maybe complaining about complainers was somehow...wrong.

But more and more I've been wanting to discuss the elephant in the room, not quite knowing how to do it. I tried, badly, not too long ago to blog about what it is like to be the mom of a kid with an undiagnosed Behavioral Disability, or in someone else's terms, a child with Serious Emotional Disturbances. It was written at a stupid time, when I was fragile and frightened and I was angry and upset when people actually tried to HELP me. Well, the thing is, the Internet can not diagnose my son, or I don't think so anyway. We've been seeing professional psychiatrists for a number of years and well...I just trust them more than random posts from well intentioned people who don't know too much about my child. So lesson learned for me. I decided to put that post back under wraps and never ever discuss it again. Ever.

Except...it fills about 90% of my waking thoughts. And it is an elephant that needs to be discussed. This week a little boy with Asperger's made news all over the US, had folks buzzing everywhere when he was voted out of his class with his teacher leading the way. What makes me the saddest about this story is that people seem to think that either the mistreatment of this child can be justified OR that it is somehow an isolated incident. The sad truth is our children, and I'm referring to those of us with kids who have behavioral disabilities, are possibly the only children that it is seen to be normal and needed to punish regularly for their disabilities. What would you think if a child who suffered from epileptic seizures lost all of her playground privileges for weeks at a time after each seizure? What would we think about a child who had cerebral palsy being seated in a corner facing away from the rest of the class, and telling his parents that it is "preferential seating" for his condition? What if our educational system decided that the best way to mitigate a diabetic child going into insulin shock in the classroom was to suspend him each time it happened? This is the kind of thing we as parents of THESE special needs kids deal with on a regular basis. We begin to feel like our lives are being systematically destroyed, but worse yet, we see their future being systematically destroyed. Help is hard to find, hard to navigate and the waiting lists for everything are getting longer.

Parents need to be able to have a voice. We need to not feel like we should be hiding away somewhere, waiting for the next shoe to drop. If my talking out loud about it here will enable even one person somewhere to know that they are not alone and that there is no shame in parenting one of these amazing and exceptional human beings, it is so worth it.