Friday, May 30, 2008

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. 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.


Becca said...

wow, very brave and honest and so true. I confess to being one of the parents who sighs with relief at having dodged that particular bullet, but this post brought me up short: I need to understand it from the other parent's point of view, not just see disruptive children as a problem inflicted on my kid. thanks

farm suite said...

Barb already had me in tears today. Your post is so dead center. And your child is blessed to have you for a mom.

Sometimes I just want to wrap my children in a blanket, serve hot cocoa and keep them home for life. I am so at my wit's end on this elephant in the room.

Thanks for your brave post.

farm suite said...

oops... that sounded like Barb made me cry. Well, both of you moved me to tears. Is that better?

Karly said...

I saw this interview this morning actually...I was telling the husband that I often wish I could just lock Kailey in the house forever. And the thing is, it would have been terrible to do to any child, let alone one with a physical, mental or emotional impairment. I just don't even understand the possible thought process there.

Anonymous said...

I love this blog Ei....are you talking about me and whining? LMAO!

Anyway, you are so right, and my heart breaks for you guys, and all the families that are putting up with this treatment. I don't think I could do it, I really don't. All three of you simply amaze me.

LaDonna said...

And sweetie, you need to remember that YOU are not alone. That's all those people who tried to help were were saying. You're not alone. Others have been through it, too.

For me, I've just been lucky enough to get a diagnosis and some effective treatment.

Valentina said...

This is my first time reading your blog and I'm glad I did. My daughter was diagnosed with "Specific Learning Disability" at 3 1/2 but she was recently rediagnosed with mild/moderate mental retardation. I feel very wary of sharing that with anyone. Even though she's had special needs for a long time I'm so afraid of how that label might change things. Life is hard enough for her without the stigma of that label.
Thank you for your post. You can't possibly know what this is like unless you're going through it.

Yes, I did.

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