Friday, August 1, 2014

My opinion

Something on my mind today. As everyone that reads my blog knows that I have two grown sons that have Fragile x syndrome. They have struggled with different things in life and one of the things that bother me is them not having a true friend. I know that there are a lot of so call normal people in this world that don't have a true friend so I don't know why it bothers me so much. Times have changed and children growing up now days don't spend time with cousins, aunts and uncles even sometimes grandparents. My children only get to see cousins from my side of the family around Christmas which is one time a year. They see the cousins on the other side more often but they have never been close or spend the night with one another. They don't know extended family either. This is sad to me. I know a lot of it has to do with my parents passing away at such a young age. This has put the gap in family getting together any more.

Not only is it family that have not gotten to really know my children and getting the chance to experience something that would touch their hearts forever. It is people that they went to school with for the past 19 years. Out of these years they have not had a true friend. I know also that some of it has to do with me and the farmer being over protective. I read this article this morning and me and the farmer have different views on it.

In 2012, when my son was born with spina bifida -- a birth defect of the spine -- I joined the ranks of millions of people worldwide who love someone with a disability. I've learned a lot in the year since: how to find the best wheelchair-accessible parks, how to schedule multiple therapists, how to be a mom. But more than that, I learned that I am "a special kind of person." At least, that's what people told me.
Why? Because it takes a special kind of person to raise a child like my son.
I'll be honest and say that at first, I really liked being a special kind of person. Who wouldn't? It was nice. It meant I was doing something good, something important and noble. I am, after all, raising a child who has a disability.
But after a few months, it didn't sit so well anymore. Being called a "special kind of person" began to make me uncomfortable. And then I saw a photo on Facebook that made me realize why. It was a picture of a teenage girl dressed for prom and standing beside her date -- a boy with Down syndrome. The picture was charming, but it was the comments that got to me:
"Honorable move, looks like she made his day!"
"Someone at my school did the same this year. It made me proud of her because she's absolutely beautiful and could've had anyone she wanted."
"That is very sweet of her..."
Turns out, she was a special kind of person, just like me. But it felt hurtful somehow. I started wondering, "How would I feel if the boy in this photo was my son?" Sixteen years from now, when my son goes to prom, will people applaud his date? Will they see her as a martyr? As a saint?
Just what are we saying about people with disabilities when we glorify those who love and care for them?
Think of it this way: I am married; I have a mother and father who love me; I am surrounded by friends. But what if, time and again, I overheard snippets of conversations -- words that praised them for the love and care they've given me? Imagine whispers to my mother: "It takes a special kind of person to raise a kid like that." Or to my husband: "You are such an inspiration -- I don't know if I could be with someone like her." These comments would say so much about my worth -- my value.
Believe me, I am not diminishing my work as a mother. I am not ignoring the extra time and energy it takes to carry a wheelchair up a flight of stairs. I am not pretending that my son is just like everyone else. But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable -- that it takes someone "special" to muster up this kind of affection. It seems we reveal our innermost bias; at least, I think I did.
The thing is, all love should be praised, and all sacrifice, too. Loving someone is hard work -- whether that person is a football player, a musician or a wheelchair tennis star. So call me hardworking or call me a wonderful mother. But if you call me a special kind of person, I'll probably nod and smile, because I know a secret: If you knew my son, you'd love him, too.
So, I guess you're a special kind of person -- just like me.

This is a very good article and I enjoyed and could even put myself in the position. I agree that I don't always  like being called a "special kind of mom". I am just a mom like everyone else. All of you would do the same thing or at least I hope you would. But than there are other times I think I deserve to be called a special kind of mom!! The reason  that this article bothered me I have  high lighted. I know that this could bother some parents. Feeling like this person is just trying to pat their selves on the back, but I don't always agree.  My oldest son was voted by or rigged for him to win "prom king" I was so proud that the kids did this for him giving him a memory that he will never forget. He is still talking about it and probably will until he is old. I mean, don't our children deserve the right to have some of the fun things that so call normal kids do? I look at the bigger picture on how it makes my son feel I could care less about the person that is doing it "the date". I have asked his friends to call him, text him and just give him some normalcy.  This is just my opinion and I wanted to share. It has been on my mind every since I read the article.

1 comment:

  1. Look outside. The world out there doesn't know how to react to people who are different. Your first example shows that people don't react in a positive way. It's easy to beat yourself up, but couldn't other people take some of the responsibility.


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