Navigating the Gray Area

There's such a fine line between having special needs and being treated specially (read: differently). Well actually, I don't think the line's so very fine for the people who have the special needs. My son, along with many other kids with health issues, will tell you he wants no special treatment, whatsoever. None. He's not interested in being a "poster child" for his disease, he doesn't want to educate people, or even make much of a difference in the world right now. He's fifteen. He wants to hang out with his buddies, talk about girls, make stupid videos and annoy anyone over the age of 21. The last thing he wants is to be constantly reminded of his unfortunate roll of the genetic dice.

But the problem is, he does have needs that are special. Things that might occur outside of the house....when he's at school, or with friends. Things I must address with teachers, coaches, and administrators. And this is where I run into problems. If I make too big a deal of things, I am setting my son up for special treatment... Sideways glances, sympathy, perhaps even preferential treatment (all of which are unwanted!). But if I play things down, inevitably an issue arises that a teacher may not be prepared for, and my son gets in trouble and embarrassed in front of the whole class for something like being in the bathroom for too long. 

Some people get it. But those are usually the people who ask questions. The ones who step outside of their obvious comfort zone and really try to understand. The ones who don't, are the ones who are quick to nod "Yes," when asked if they understand fully, and declare, "No!" when asked if they have any questions. The ones that don't want to deal with it, and cross their fingers that nothing happens on their watch.

Kids can be heartless and unthinking. My son has had kids come up to him and matter-of-factly say, "You're gonna die". That kind of blatant idiocy doesn't bother my son. He knows that these are the same kids who would be calling him names or bullying him for other reasons, if they didn't have something so easy to use. 

But unfortunately, sometimes it's the most well meaning people who can unwittingly do the most damage. People who want to know how to handle the situation or want information, but are afraid or too uncomfortable to ask. The best advice I can give, simply as a mom, is to just inquire from the heart. Be honest about what you want to know, and be ready to hear what that person has to say, even if it might make you uncomfortable. Look them in the eye and really listen. Take them at their word and don't try to read anything deeper into what they tell you. That's what I do with my son, and sometimes he reveals how he's coping. Or, sometimes he says nothing at all. But it's his story to tell... How he wants. When he wants.

If you want to read other stories of people who have been affected by disability discrimination, go visit Diary of a Goldfish