I was honored that NOAH asked me to be a blogger on the NOAH Parent's Blog. I thought I would use this as way to share some of my thoughts with all the NOAH parents. At that same time, I hope the NOAH parents would share some of their insights as well. I'm a firm believer that a blog is only as good as the discussion it generates. So bring on your comments!
I've been doing a lot of thinking lately about how I can make my child's journey into adulthood a more pleasant one. Obviously, every child experiences ups and downs. With three kids, all in different stages of life, my wife and I are experiencing different parts of the journey at the same time. For example, on the 2nd day of school, our new kidergartener got off the bus and said, "I quit."
"You quit what?" my wife said. "Riding the bus?"
"No." he said. "I quit school."
Our oldest daughter is hurtling headlong into adolescence (boys, junior high dances, etc.) and experiencing all the different emotions that go along with that. Our youngest daughter, who has albinism, just got fitted for her new glasses. She has just now begun feeling for changes in elevation whenever floors change texture or the carpeting changes color.
So what does all this have to with educating the masses? Well, one of our primary responsibilities as a parent is to make our child's environment as comfortable as possible. That also includes interaction with random people in the grocery store, restaurant, etc. My oldest daughter and I recently attended a Christian Music Festival. We were standing in line to meet one of the bands, and standing a few people in front of us was a young lady with albinism. We were close enough that we could hear her conversation with the band. One member of the band remarked to the young lady, "You must dye your hair!" To which the young girl replied, "Uhh... yeah, thanks."
Now obviously the band wasn't trying to be hurtful or disrespectful, but I felt sadness for the young lady. Sadness that she likely had been hearing comments like that her whole life, and had been conditioned to respond in that way. It made me think about my own daughter, and how she might react to comments like that as she gets older.
I'm not a very confrontational person by nature, and sometimes I have an "ignore the ignorant" approach. I've been in the grocery with our youngest daughter, and inevitably, I hear someone say "look at that white hair..." They don't say it in a mean way, they are simply pointing out that she is different. But they don't point out our other kids' dark hair, so she is being singled out. My dilemma is this: Do I approach that person and kindly point that my daughter has albinism, and explain what albinism is? Or do I simply go on about my business as if their comments weren't any big deal? Usually, I just go on about my business, ignoring those comments or chalking them up to lack of knowledge about albinism. Or if they are speaking directly to me, I'll say something like "Uhh... yeah, thanks."
Our daughter is young enough that she doesn't understand the comments. But as she gets older, am I sending the right message? Is it okay for our daughter to just ignore those comments? Or should we teach her how to respond in a respectful manner? Kids have enough things to deal with as the grow up, and albinism adds another level of issues. We want her to have good self-esteem, and to feel like she fits in. But how can she feel that way when she is so outwardly different?
I don't think I'm the only parent who deals with these issues, so please leave your comments. If you have an older child with albinism, please let me know how you have taught your child to deal with these issues.