Normal is Relative-Autism & Epilepsy Mom

~via Shut Up About Your Perfect Kid!

“I want to know what passion is. I want to feel something strongly.”  ― Aldous Huxley, Brave New World

How fortunate we are. Look around you. Society is conditioned, controlled, distracted. Priorities are confused, You can’t even say you don’t watch a certain TV show without people thinking you’re strange.

But we do not fit into the “mold.” Through necessity, we have had to make our own normal. They try to force our kids into being “appropriate” enough to live in society. They condition them like puppies when they’re young, trying to break their spirit and get them to respond appropriately to cues and situations in ways that are unnatural to them. They make us believe that our priority should be to help change this child into someone acceptable to the rest of the “normal” world. Fifty years ago they would have simply told us to put our child in an institution, where they could either be trained or hidden, and we would have, and we would have thought we were doing the right thing for all involved, in the name of being acceptable and normal.

But now look what we have! I see so many people on here, so many affected children speaking for themselves, and so many parents who embrace the individualism that comes with having a child that does not care what society thinks about him or her. Our priorities, unlike the novel, are about what our children need, not what society wants of them. They are counting how long a seizure lasts, keeping them safe 24 hours a day, learning their individual languages, adapting to new sleep patterns for life, learning the best ways to teach your child to become the best they can be inside their own personality, actually paying attention to our children (unlike many “typical” parents!), and maybe finding time to be alone in the bathroom long enough to take a shower.

As for passion? Ask any parent who has held their child while they were having seizures and put hours upon hours into researching epilepsy and medication how passionate they are about raising their child. Ask any parent who has researched fifty methods of teaching Autistic children everything from eating to talking to potty training how passionate they are about giving their child the best future they can have. Ask any parent who has ever had to advocate for a child without a voice how passionate they are about everything.

Education with a splash of Autism

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.

I don't know if this is a real life troll or a truly disgusting human being, but I'm putting it out there because it's out there.

News Story:

Why is it that when people see us or meet Rachel they feel the need to tell us about every friend or family member's cousin's child they know with a disability or every "handicapped" child they let their kids play with???