What Do You Say?

As the parents of a 20-year-old with neurological issues, we are going through some pretty typical teenage stuff as well. Of course we’re happy when we see the all too rare developmental growth spurts that come between getting her seizures and her EEG activity under control, but each growth spurt also brings with it more questions about the world around us. Even though Rachel still cannot read or write, or tell time or count money, live independently or get a job or go to college, a developmental spurt brings with it a better understanding of abstract concepts, and more questions about why she is not like other teenagers and can’t do the things they do. What do you say? 

Rachel is becoming increasingly aware that she doesn’t have friends her own age. We were in the car yesterday, and she saw a group of teenagers walking on the sidewalk, laughing and talking, and she let out a big, heartbreaking sigh. I asked her what was wrong. She asked, “Those teenagers are walking by themselves and happy. Why can’t I walk by myself and be happy and have friends?” How do you answer a question like this? Of course you just want to cry yourself, self-awareness in someone like Rachel is so bittersweet to you as a mom. You are excited to see her develop, but her “wall” of protection against the meanness of the world is breaking down, and she is feeling her first pangs of loneliness. But you can’t cry, because you have to act like it’s just a fact of life and nothing to be sad about. You never know if your answer to any deep question is the right one, but  you have to let her know that she is perfect exactly who she is. (I don’t like to say “the way she is” because she is who she is, and it’s perfect.)

So I told her that walking by herself is just not safe, and we love her so much that we can’t stand the thought of her getting hurt or someone hurting her, and she agreed – for now. Then I told her that she is a special person, who is not mean and would never hurt anyone else’s feelings, but that other people are not nice like her all the time. Other teenagers would not be as nice to her as she is to them, and it’s okay not to have friends like that. That concept she does not understand so well. I don’t think she can imagine why other people wouldn’t be nice to everyone or why they wouldn’t like her.

And I’m not going to tell her yet. I’m going to explain as much as she can accept for the moment and answer her questions as they come along. Hopefully we and her real friends can fill her life with enough love that those people won’t matter.