Last week I went to talk to Owen’s class about his diagnosis so they could feel a little bit more comfortable with him. And hopefully, more comfortable with special needs in general. When I called the school to ask the principal for permission he was surprised and unsure, apparently, no parent has ever asked him to do this before. After a short conversation, in which he wanted to make sure I understood that Kindergarten children might go off topic, he agreed.
I have several friends who are parents of children with special needs, many of them have gone into their child’s classroom to do the same sort of talk. All of them have said what a great experience it was for them and for the class. So, while I was more nervous about this public speaking engagement than any other, I decided to go and talk to a room full of kids who are five and six. Gulp.
There was one big question I needed to answer before even going into the classroom; should I ask Owen’s aide to take him out of the room while I talked to his class, or should I allow him to stay in the room while I talked about him? Each parent I spoke to had their own reasons for choosing one or the other. My mother-in-law asked if I was going to have Owen leave the room, she was concerned he might be embarrassed. In the end, I decided to have Owen in the classroom while I spoke to his class. It just seemed like it would send the wrong message to tell them not to feel uncomfortable talking to Owen or asking questions but to have him removed from the conversation.
I am so happy he stayed in the classroom. When I walked in, he was thrilled to see me! He jumped from his chair and ran over to me, wrapping me in a rare hug. Then he pulled me all around the classroom by my arm, showing me his seat, his cubby, the weather charts on the blackboard (his teacher told me he was the weatherman that week for the class), and the chrysalis the class is caring for. While I spoke, he sat on a stool next to me, beaming with pride. It felt like a gift to see Owen in his classroom, this place where he gets to be separate from me, where he gets to work out who he is.
I spent some time working out an outline of what I wanted to say. I started with reading “The Adventures of Super Owen” which is a short comic a friend helped me create for one of Owen’s birthdays. The comic tells the story of a kid who might have some differences, but more than anything he is just like anyone else. Owen’s classmates each got their own copy.
Next, I shared with the class, that everyone with 18q- is different from each other. No two people with the diagnosis are exactly the same, just like everyone in the classroom has their own differences. We talked about how some might wear glasses, some of us might have allergies, we might have freckles, or we might be shy. We talked about how I have a twin sister and even though we look almost alike, share the same birthday, and are the same age, that even we are very different from each other.
After we discussed our differences, I wanted them to know that even though Owen might be a little different from them, he is also very much like any other child. I asked the kids what types of things they like and they had so much fun sharing their favorite things. Kids in Kindergarten like so many things, they like to run, read, and dance. They like bananas. They really, really like to tell you all the things they like. So I shared some of Owen’s favorite things, music, books, amusement parks, dancing, and dinosaurs. When I said Owen loves dinosaurs and asked who else did, every hand in the room shot up into the air.
It was just the right time to explain, that even though Owen might be a little different, he was also very much the same and he wants to be friends with them. We talked about a few ways they could be good friends to Owen. I wanted them to know that, even though he can’t always tell them what he needs, he is really easy to be friends with. It can be as simple as sitting with him at lunch or reading a story with him. He even has one little friend who will meet him at the door in the morning with his aide. I hope her mommy knows she is raising an awesome little girl.
I finished the conversation by telling them all that special needs aren’t something to be sad about. We don’t need to feel sorry for Owen, there are some things he isn’t as good at as some of them, but there are other things he is very good at. He has also gotten to do things that he might not have, if he didn’t have 18q-. I get to share with you on this blog because of it, his photo has been shared around the world, and we have traveled to conferences around the country to meet other chromosome 18 friends. Having 18q- doesn’t define Owen, it is just a small part of who he is.
That is what I shared with the class. At least I think that is what I shared, it is what I outlined. Do you know how hard it is to stay on track when you have a room full of children staring up at you, several who have their hands in the air constantly, waiting to ask you questions or make a statement about something? I could hardly focus on what I was saying. How do teachers do it?
I wrapped it all up by asking if the kids had any questions. I hardly slept the night before worrying that they would ask things that would be impossible to answer. They might say things that could embarrass Owen, or me. I worried, and worried and worried. What if they asked why Owen wasn’t potty trained? What if they asked if he is stupid? What would I say if they asked why he can’t talk or how long it will be before he can? I wanted them to know they could ask anything but I wasn’t sure I could answer everything. By the time we got to questions I was so nervous. I spent way too much time worrying. His class seemed the most curious about what Owen enjoys eating.
Then we danced it out. His teacher put on the radio and we had a mini dance party. It was awesome.
In the end, I think the person who learned the most was me. The kids seemed a bit confused about why I was even there. I guess they haven’t been all that concerned about Owen’s differences. I think they like him, just for him. What more could any mom of any kid hope for?