Wednesday 22 October 2014
Thursday 2 October 2014
Maybe someday...
I am usually pretty easy going. I like to look at things objectively and keep an open mind. Having a child with Down syndrome has not only opened my eyes but my ears as well. Hearing certain terminology used in regards to Down syndrome, truth be told...it irritates me. And I'm not talking about the R word. We all know that is considered politically incorrect and there already is a movement to try and eliminate that word from the rest of the world's vocabulary. I'm talking about other words...words you wouldn't automatically think would sound insensitive. It may just be me, but there are some that seem to set me off. I would like to try and shed some light and hopefully set the record straight. Maybe SOMEDAY, the choice of words used will be different.
Every time I have heard or seen this word used in reference to Down syndrome, it has been in news articles or broadcasts. But some people are under the assumption that our children "suffer" from Down syndrome. To me, that sentence just screams tragedy. Don't get me wrong, it's not all sunshine and rainbows either but I hardly consider my son to be suffering in any way, nor is he "affected" by his diagnosis. There are certain aspects of Ds that affect or delay development, or cause some significant health concerns, but I would never say that he is "affected by Ds". To be clear...Down syndrome is NOT a disease. It's not painful. It isn't a punishment nor is it a sentence. It is something my son will have forever, but it won't keep him from living a full, happy life. In fact, surveys have shown that 97% of people with Down syndrome actually LIKE who they are. That sounds more like thriving than suffering to me.
My son and many other children and people with Down syndrome are living happy and productive lives. Their "condition" doesn't limit them from doing anything. With hard work and the proper support, people with Down syndrome can achieve whatever they set out to do. The phrase "The only disability is the inability to see ability" seems very suiting. Down syndrome is a medical diagnosis, not a condition or a disorder. It is only a small PART of the individual, and the number of chromosomes should never define ANYONE or their abilities.
It is very common to hear a baby or child with Ds, called a "downs baby". Hearing that term doesn't bother me much, but it still tugs at my heart a little when I hear someone say "Oh, he's downs or that little downs boy". Only because I don't want Down syndrome to be the first thing a person sees or thinks of when they look at my son or his friends. As a kind reminder...there is more than what meets your eye. Our children are people. Just people. Incredible and extraordinary people. You'd never hear "she's that little glasses girl or wheelchair boy". One may say "the little girl with glasses, or the boy in a wheelchair". But when it comes down to it, why is it so natural for people to voice the obvious differences? And seriously, does it really matter? Everyone wants to be seen for WHO they are, not for what makes them different. It's important to see the person FIRST rather than the disability.
Now the word "perfect" is a biggie for me. It's not the word so much as the message behind it. What exactly does being perfect mean? According to the dictionary, it's defined as "without flaws". Interesting. And anything deviating from that, I assume would be deemed imperfect or abnormal? So, when one describes a person or thing as perfect, it would be considered a compliment. And of course, everyone likes perfect.
This is where my mind starts racing...
I have never really put much thought into the word until recently. When expecting a child, whether it be the first, fifth or fifteenth, the hopes are for a "perfect", healthy baby. Of course. Where I have trouble is when we start using the word "perfect" in terms of someone's genetic makeup. In my opinion, perfect is a word that comes with too many expectations. Following a prenatal diagnosis, there are certain medical practioners that encourage the mother to terminate the pregnancy. Having been in that position, I'd be lying if I said I wasn't torn. We were upset. We were angry. And we were scared. All common feelings under the circumstances, I suppose. I remember the pain, the sadness and the self doubt. If having 46 chromosomes is seen as "perfect", then having 47 chromosomes is considered what exactly? A mistake? A flaw? Does having 47 chromosomes make MY baby seem any less perfect?
Which leads me to the phrase "letting go of perfect". I have seen this a few times and I understand the message is acceptance for things we can not change. That everyone sees things differently and learns to embrace life in ways they never thought they could. It's grieving the loss of the idea of the child they thought they wanted. But find love and beauty in a gift of a child they never knew the needed. I get it. I think the message is beautiful, but personally, I haven't "let go" of anything. We wanted a perfect child, and that is what we got. Our son may not be seen as "perfect" by society's standards but he IS perfect to us. His extra chromosome makes him who he is. And we wouldn't change him for the world. True story.
Words hold a lot of hidden power. In any given situation, it is wise to choose your words carefully. I am out to change the world for my little boy. Even if it is only one person or one word at a time. It may not seem like much, but together we will make a difference someday. Change your thoughts and you can help change the world.
Thank you:)
Every time I have heard or seen this word used in reference to Down syndrome, it has been in news articles or broadcasts. But some people are under the assumption that our children "suffer" from Down syndrome. To me, that sentence just screams tragedy. Don't get me wrong, it's not all sunshine and rainbows either but I hardly consider my son to be suffering in any way, nor is he "affected" by his diagnosis. There are certain aspects of Ds that affect or delay development, or cause some significant health concerns, but I would never say that he is "affected by Ds". To be clear...Down syndrome is NOT a disease. It's not painful. It isn't a punishment nor is it a sentence. It is something my son will have forever, but it won't keep him from living a full, happy life. In fact, surveys have shown that 97% of people with Down syndrome actually LIKE who they are. That sounds more like thriving than suffering to me.
My son and many other children and people with Down syndrome are living happy and productive lives. Their "condition" doesn't limit them from doing anything. With hard work and the proper support, people with Down syndrome can achieve whatever they set out to do. The phrase "The only disability is the inability to see ability" seems very suiting. Down syndrome is a medical diagnosis, not a condition or a disorder. It is only a small PART of the individual, and the number of chromosomes should never define ANYONE or their abilities.
It is very common to hear a baby or child with Ds, called a "downs baby". Hearing that term doesn't bother me much, but it still tugs at my heart a little when I hear someone say "Oh, he's downs or that little downs boy". Only because I don't want Down syndrome to be the first thing a person sees or thinks of when they look at my son or his friends. As a kind reminder...there is more than what meets your eye. Our children are people. Just people. Incredible and extraordinary people. You'd never hear "she's that little glasses girl or wheelchair boy". One may say "the little girl with glasses, or the boy in a wheelchair". But when it comes down to it, why is it so natural for people to voice the obvious differences? And seriously, does it really matter? Everyone wants to be seen for WHO they are, not for what makes them different. It's important to see the person FIRST rather than the disability.
Now the word "perfect" is a biggie for me. It's not the word so much as the message behind it. What exactly does being perfect mean? According to the dictionary, it's defined as "without flaws". Interesting. And anything deviating from that, I assume would be deemed imperfect or abnormal? So, when one describes a person or thing as perfect, it would be considered a compliment. And of course, everyone likes perfect.
This is where my mind starts racing...
Which leads me to the phrase "letting go of perfect". I have seen this a few times and I understand the message is acceptance for things we can not change. That everyone sees things differently and learns to embrace life in ways they never thought they could. It's grieving the loss of the idea of the child they thought they wanted. But find love and beauty in a gift of a child they never knew the needed. I get it. I think the message is beautiful, but personally, I haven't "let go" of anything. We wanted a perfect child, and that is what we got. Our son may not be seen as "perfect" by society's standards but he IS perfect to us. His extra chromosome makes him who he is. And we wouldn't change him for the world. True story.
Words hold a lot of hidden power. In any given situation, it is wise to choose your words carefully. I am out to change the world for my little boy. Even if it is only one person or one word at a time. It may not seem like much, but together we will make a difference someday. Change your thoughts and you can help change the world.
Thank you:)
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