I did something awesome today.
I talked to the boys' kindergarten class about Fragile X.
I was so nervous! Silly, I know. I was just worried they'd ask me questions that would be hard to answer. But they didn't, they were very easy and very sweet.
I asked them if they’d heard of Fragile X. Nobody had. I told them Fragile X is kind of like autism, and that it's something they were born with, that makes their brains not work quite like everyone else’s. They didn’t get it from doing something wrong or different, they were born this way.
I said it makes them different in a lot of ways, but they are the same as the other kids in a lot of ways, too.
Then I told them I had brought something that I thought might help them understand how Zack and AJ are different, and yet the same. And I brought out the toy car. It's pretty cool. AJ got it for Christmas.
I pushed the button that makes the car rev its engine, flash its lights, and then go forward, popping a wheelie. I started to go into how fun the car was and immediately they interrupted me and wanted to know what the other buttons on the car did. So, we had to try out each button. Then one by one, half the class needed to tell me about the remote control cars, trucks, and helicopters they have at home. And one boy didn't have one but he'd seen one at the mall. So I let them tell me about them all, and then we got back on track.
I told them how the car was pretty fun, but if it didn't have the lights and the noises and stuff -- if it didn't go unless you pushed it with your hand, it would still be really fun, right? You could still play with it. They all agreed (thank goodness) that it would still be fun. Then I said, that's what Zack & AJ are like -- they are like the toy car that doesn't have lights or noises, and doesn't go by itself. You have to play with them a little differently, but they can still be a lot of fun.
Then we made a list on the whiteboard of everything they like to do. And they were very enthusiastic about this task. They could have spent the rest of the day telling me things they like to do, and watching me write them all down on the whiteboard. I prompted them to say things like "playground" and "swimming" since it's winter and I don't think they necessarily have those activities on their minds at the moment.
Then we went through the list, one by one, and talked about each thing. I asked them if they thought Zack and AJ liked each thing too, and they guessed, yes or no. It was funny, most of the time they were completely right. They understand already what the boys can and can't do. They knew they liked puzzles, books, and swimming, but knew the boys would not play football.
Then I lowered my voice and told them I had one more thing to tell them, something very special and just between us. I asked Mrs. Williams if she could give us a moment to chat, and she agreed (she was in on it, I didn't surprise her) and she went to the back of the room.
I leaned in a little closer to the kids, and they leaned in closer to me. They were all ears and big eyes -- I had them.
I asked them, who do you think is the most important person in this room?
One boy knew right away -- he said Mrs. Williams. Yep, I said, she is the one who will teach you and help you with everything you need in this class. Now, who do AJ & Zack learn from?
And that same kid said, "Mrs. Williams?"
I said, nope. They learn from each of you. They won't actually learn much from Mrs. Williams, but they are watching and listening to you guys, all the time. So it's very important that you act appropriately and do what Mrs. Williams tells them too. Even if they aren't talking to Zack & AJ, even if they just let them watch what they are doing.....they are important teachers for the boys.
Then I called Mrs. Williams back over and told her we were done talking, and thanked her for understanding.
I told the kids that it’s okay to notice the ways in which the boys are different. It’s okay to ask your teacher questions about them, anytime. It’s okay if you don’t always understand what they say or do. But I told them it’s never, ever okay to make fun of them, or anybody else for being different.
Then I told them, go ahead and say hi to the boys when you see them next, and then offer them a high five -- they love high fives! Then I gave each kid a high five.
I thought it went really well, I was just racing with adrenaline when I left. I am very excited that I did it!
A Fragile X Christmas 2017
5 days ago