"It's not fair!" How many times a day do you hear this? It's not fair that I have to clean my room, it's not fair that I can't stay up late, it's not fair that I have to eat my vegetables. There are so many things that children find are not fair, and a million reasons why. Sometimes it's not fair because their friends can do it (or don't have to do it), or that their friends have it (or don't have to have it). Other times it is because their siblings are allowed but they are not. But, like most parents, I often hear that things are not fair when fairness isn't even part of the equation, it is just thrown in there for arguments sake.
I have 3 daughters and 2 are teenagers, so I get extra helping of "it's not fair". I will start with my oldest daughter. She is smack right in the middle of her teens, and loves to test the waters of arguing and complaining, trying to see just how far she can push. I know this is normal and expected and I have every intention of not taking it personally. But if I stop to look at her life, it really is not fair. It is not fair that she had to spend so much time as a small child being shuttled from one place to the next while we were having Katie tested, and then later spending endless amounts of time in various doctors offices. It isn't fair that Katie has no sense of boundries and will walk into her room at any point and get into all her things. It isn't fair that she will never share those teen moments with her sister, like giggling about boys, or shopping for clothes, or hanging out watching teen movies, reading magazines or riding their bikes to McDonalds for a french fry. It is not fair that already she has accepted the responsiblity of caring for Katie should something happen to me or my husband. She was never asked, never expected to, she just informed me that she would. It is not fair that at 7 years old she had to defend her sister from a friend who was making fun of Katie, then defend herself further when they said she was lying. It is not fair that many times she has to babysit Katie, when a 13 year old should be able to watch herself.
I don't know where to begin to list what is not fair for Katie. It is not fair that she will never drive a car. It is not fair that she will never be able to live on her own. It is not fair that she will never marry or have children. It is not fair that people who say that they are her friends make excuses to not spend time with her. It is not fair that people use her as a charity case, a poster child, or act like they are so involved with her life when they really have no idea what her life is about. It is not fair that, while she cares so very very much for some people, that they do not even simply acknowledge her, even on her birthday.
My youngest daughter has never known life before Autism, which is not fair. It is not fair that she has never had a single day in her life when Autism hasn't had some affect. It is not fair that she has to share her room with Katie, who talks to her "friends" for about 2 hours every night at bedtime. It is not fair that Katie is always at home when her friends come over, wanting to hang out with them, trying to fit in. It is not fair that she has to leave family parties, or playgrounds, or picnics because Katie was having a meltdown. It is not fair that she has to do more chores because Katie is physically unable to do them, and it's not fair that she has to go to bed so early. It is the most unfair that her friends have told her to tell Katie to leave them alone at a birthday party, when Katie was simply standing behind them, enjoying watching all the kids having fun. I think out of everyone affected by Katie, my youngest has been the most embarrassed by her, and that is not fair. I understand the embarrassment, and I do not fault her for feeling that way. It is a natural response, and I would probably feel the same way if I was her age. It is not fair that she has those conflicting emotions, because she loves Katie very much, and I am sure feels guilty about the embarrassment.
It is not fair to my husband and me that we will never have an empty nest. We will always have Katie at home with us, and always have to worry about her schooling, health, entertainment, and safety. Any plans that we make will have to factor her in. It is not fair that every time I see sisters sharing an intimate moment, I cry a little because I wish that my girls could have that kind of relationship. It is not fair that I have been writing this blog to help other people, and I have been writing this blog as an outlet for all the thoughts and feelings that Autism brings up, and people have read my blog and thrown it back in my face as attacking them or condeming them or judging them.
I think the thing that is the most unfair is that more people are not like Katie. Katie loves people for who they are inside, and she loves them for how they treat her. If you treat her right, she will fall in love with you immediately, and then she will love you forever. I have never seen her get mad at anyone, ever, other than her father and I, and that wasn't really "mad", but more like a temper tantrum. It is not fair that everyone doesn't have a child like Katie, who has taught me more about life, and priorities, and God, and faith, and laughter, and innocence, and fun. It is not fair that some people will read all this and judge me and think that I am complaining, or question my love and devotion. When I catch myself in that moment where I am picturing what life would be like without Autism, I have a hard time doing it. That life would not include Katie, so that is not a life that I want. But life isn't about what is fair and not fair. Everyone is not given the same opportunities, or challenges. All I can do is make sure that my daughters, my family, come through these Adventures in Autism as better people, loving each other, loving God, loving family, and loving life. That will be a fair trade off.
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