I understand what it feels like to raise a kid who is “different”. I know what it feels like when others just don’t get it. They nod their head, they listen, but then a minute later something flies out of their mouth that makes you want to scream.
I understand what it feels like to want the world to accommodate your child’s every need. You only want them to have an even playing field. You want their teachers to help them. You want their friends to take it easy on them; to wait for them when they are falling behind or struggling.
I remember how unfair everything felt when Luke was first diagnosed. Heck, there are still times when it feels unfair when I watch my kid struggle. When he tries to pretend he can see so he can just feel “normal” for a moment is a horrible thing to watch. It is horrible. It is a feeling I would not wish upon anyone.
Everyone wants to be able to relate to others and when you have one thing that always gets in your way…something you can never take away…well it sucks.
One day, Luke was with a group of kids and he was talking and laughing with the rest of them. He got right up in one kid’s face as he was talking. The other kid put his hand up and said, “Luke, back up. You’re too close.”
I was so used to Luke getting up in my face, that I failed to even think of how uncomfortable it made others. I started observing. I saw adults backing away from him, I saw kids backing away from him. I saw.
I didn’t say anything to Luke right away because it was hard to think of having to tell my kid to stop doing something that helped him. But then I began to think of the life I wanted for him. I thought of the person I wanted him to become. My parenting became harder and life became more gray.
See, Luke can’t have it all in life. I can’t allow him to do what is best for only him. He must think of others. He must find a healthy balance between trying to see his world better and also seeing the world through other people’s eyes. It is the only way for him or for any of us to share life with others.
To take care of himself and others is what I envision for him. It makes things more complicated. It makes my job harder. The difference I have seen socially since Luke has improved on his personal space issues (and understanding of personal space) shows it is worth it. It doesn’t make it any less heartbreaking to see him struggle, but I know it will make him a better person.
It is worth raising your kid, no matter what the struggle, to simultaneously think of themselves and others. There are times when we teach Luke to think of his needs first. Sit in the front of the class. Use enlarged print. Put sunglasses on when the sun is bothering your eyes. Those are black and white. The gray areas are where other people are involved. Sometimes in the gray, we must choose others. I now know getting in other people’s personal space is not worth the benefit it has for Luke. It is one of the many times he has to learn to accommodate to the world. It is a little less fair, but we all have to do this in life.
Remember, I understand. It is hard to choose others over you own kid. Over someone you love unconditionally. We all deserve to feel normal, but we cannot always take away from other people to do so. Sometimes what is best is to see the gray and choose some middle ground for the sake of others.