There are so many good people in the world, teachers, therapists, doctors, social workers, who go above and beyond to help families get their needs met. Then there was this guy.
He glowered above me. “I know what these kids need! Are you questioning my expertise?”
Well, yeah. Besides, I wasn’t talking about “these” kids. I was talking about my kid. And he has a name.
“This is just getting insulting!” He stormed out of the room.
I sighed and continued writing in my notebook. I had been down this road before. It is a situation I actively work to avoid. Once people get on the defensive, all hope of reaching an agreement tends to go down the drain.
However, this was out of my hands before the meeting even started. He mind was made up and papers already filled out. I was calm, and well-versed in the facts and my rights. I assume that is why he resorted to shouting and running away.
I know I will work it out and get my child what he needs, as I have done many times. What I don’t know is how people still openly discriminate against people with disabilities with so little accountability.
The language bothers me. “These” kids. I have heard that phrase often. “These” kids means kids with significant disabilities. Kids with numbers attached to them that put them in categories such as “severe” and “profound”. My kids.
“These” kids get written off as not worth the effort. All it takes is one test, an IQ score, to get you dumped in the educational vacuum that “these” kids are relegated to.
The man was already gone but I wanted to ask him if he had a child. If he did have a child, would this decision be acceptable for him? If not, why am I supposed to allow it for mine?
It’s getting tired. The endless “othering” of people with disabilities, the excuses, shoulder shrugging, and outright discrimination. The expectations are nice and low, and parents are supposed to toe the line.
And usually we do. We are just a little too vulnerable. We need our child to go to school. They need an opportunity to learn, and we need to go to work or even just have a chance to get the groceries. We need, therefore we tolerate.
I would not dream of ripping apart a person I barely knew the way I have (and have seen) parents of children with disabilities be verbally thrashed by people who are getting paid to serve them.
Our desperation fills the room like the smell of burnt popcorn, undeniable. Sometimes it manifests physically, in nails that need cut or stained clothing or the bags under our eyes.
Then we can end up on the pity parade. “I know, you are overwhelmed because he’s special.”
That’s when I have to bite down the rage. It’s not him.
I’m overwhelmed because it took eight phone calls to get you to do your job. Eight phone calls. Eight times on hold, eight times giving my information, eight times explaining the same thing.
Now multiply that by ALL the people who get paid to serve my child on some way. The good ones make my day. They give me hope for humanity. But the ones that are not so good? They triple my work load. The phone calls, endless paperwork and the fight for Every. Little. Thing.
It’s a lot of things, but it’s not my kid.