Sunday, April 03, 2016

The Key

Because AJ is a pull-up thief, we have to keep them locked in a cabinet in the spare bedroom. The key for this cabinet is smaller than a penny, on a tiny little ring about the size of my smallest hoop earrings. We had to find somewhere to hide the key so AJ wouldn't find it.

First we put it on a hook on the inside of the closet in our room. Every time we needed a pull-up for either of the boys we had to get that key out of the closet without AJ seeing us. I know this will be hard to believe but as stealthy as we are, still one day AJ figured it out and went into the closet and got the key out himself. I knew this for several reasons:

1. He was wearing a pull-up instead of his underwear.
2. The key was gone.
3. There was an empty, upside down laundry basket on the floor of the closet directly under the hook where the key was supposed to be.

When questioned, AJ calmly and easily showed us where he'd left the key - right in the middle of the bed in the spare room. 

We celebrated. This was quite the intellectual achievement! Wow. This was amazing! The little stinker, he'd outsmarted us.

But seriously we had to find somewhere new to hide the key. I decided it would be simpler to have the key hidden in the same room the cabinet is in, so I stashed it under a Halloween costume of a blue M&M on the top shelf in the closet. If AJ happened to be in the room, I asked him to go wait for me in his own room, so I could retrieve the key. I'd get out a pull-up, return the key, and be on my way.

At some point though, he saw one of us either get the key out or put it back, because one day I went upstairs to find some wedding photos, and the bag that had my veil in it, my wedding shoes, and the Halloween costume on the floor in the spare room, and the key - of course - was laying in the middle of the bed. I reminisced through a few photos, stuffed the veil back into its bag, briefly thought about how uncomfortable those stupid white shoes were, before putting everything away and stashing the key on the other side of the closet - between some empty boxes. I know, not terribly creative, right?One day the other half of the closet was all over the floor, and I knew I had to get more serious.

The dresser in the spare room has a top drawer that will hold nothing wider than a small notebook. So we don't even use it because there's no clothing category where there are either so few of them or they are so small that they would all fit in that drawer. It was wasted space until I got the genius idea to keep the key up there.

That worked for a couple of weeks, but AJ the little detective heard us opening and closing dresser drawers in the room, even if he wasn't in there with us, and he figured it out, again.

Now we keep the key in a ring box in Mark's top dresser drawer, which happens to be full of socks and underwear. So it's perfect until there's a sitter or grandparent here, who might not be comfortable rifling through Mark's underwear to find the pull up key. We've been known to put it in Aliza's room, on those occasions.

Tuesday, March 22, 2016

Sticks and Stones... Regarding the R Word

I don't care that much about the words people choose.  I don't care about terminology.  I care about attitude.

I know what you're going to say. Words and terminology can determine attitudes, perceptions. After a lot of thought, I don't agree. I think it's the opposite.

I think Attitudes determine words.

I want spend my time and energy changing attitudes and the ways we think about and perceive each other. I don't think banning a particular word is going to do that.

I'm certainly not in favor of use of the R word. Obviously. I hate it. A few years ago a good friend used the term to refer to someone's behavior, and while I agreed that the behavior was poor, I was upset with the word. I'm sure she didn't realize it at all. I didn't call it to her attention, but I never forgot it, either. It's a word that hurts me, just like it does all the other parents out there of children with cognitive impairment.

Yes, the word needs to go away. I just don't think changing wording is going to change attitudes. I suppose it's a start, though.

So it's okay to say developmentally delayed, or cognitively delayed, or intellectually impaired, huh?  How long do you think it will be before you start hearing people say things like:

"What a dumbass.  He must be developmentally delayed."

"How could you think that?  Are you cognitively impaired?"

I bet 20 years from now, we'll hear all those things.  And worse.

I read once about how Kate Gosselin got upset because someone referred to her children as developmentally delayed. Isn't that the same thing? She heard that term and associates it negatively. To her, it's no different than calling her kids stupid, and she defended them vehemently. A perfect example of how the term developmentally delayed is headed in the same direction as the R word.

Holly once wrote about a comedian ruining her night out (wait a minute, that was 2 years ago? What???) by his repeated use of the R word. And I couldn't have agreed with her more. It's not funny, calling people retarded. My night would have been ruined too. Words can hurt. They do have power.

I would have done what she did.  I'd have written about how much I disliked his performance and I would have made sure everyone I knew and everyone they knew, heard about it. I wouldn't want him to get away with that because he promotes the idea that that is funny.

So don't go thinking I'm okay with the R word, because I'm not. There are few words that have a more quieting and disheartening effect on me. But words are not attitudes. They are not perceptions. They describe attitudes and perceptions. And I don't think we can change the world's overall perception of people with mental disabilities by forcing them to find new ways to describe them.

I support the whole ban the R word campaign. I just don't think it's enough. Something needs to be done to make the general population understand that people with mental disabilities are valuable human beings with ideas, opinions, feelings, and gifts. The perception is that they are a burden. That needs to change.  Let's figure out how to do that.
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