"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Monday, July 13, 2009

Umm..some people need to get a clue!

I was up early this morning. In fact, I was up before the start of the Today Show. I rarely, if ever get to watch morning T.V. Carly beats me to the T.V. and I usually busy myself with morning chores. Anyway, today I thought, what the heck. Carly was in her sisters bedroom, while Ashleigh was getting ready for work. So, I tuned into the Today Show. One of the first stories was about the husband and wife in Florida who were murdered the other day. This couple adopted special needs kids. They actually had adopted several children who were born with Down syndrome. Naturally, whenever I hear the words Down syndrome, my ears perk up. The story starts, which by the way, makes me sick to my stomach. The commentator starts his bit. Then, I hear it...the phrase that never sits well with me, "many of the children suffer from Down syndrome." Oh, I really don't like that phrase. Who the heck is this guy anyway?? He's suppose to be educated right? I mean, he is a news guy. Obviously, he knows nothing about Ds.

Sadly, people do say things like this. Is it because they are stupid? Uneducated? Arrogant? Or is it because, that's what people really believe? Do they really believe my daughter suffers because she was born a child with Down syndrome? If that's the way they think. They need to get a clue! And they really need to spend some time with Carly. She does not suffer because she was born with Ds.

Yes, Carly has had many of the health issues that coincide with Ds. Such as heart issues, thyroid issues and leukemia. She does have a cognitive impairment. But, suffer? Not so much. I suppose some people would say that it's directly related to Carly being born with Ds. However, any child can be born with thyroid issues. My cousin has a son with severe thyroid issues. He was not born with Ds. Any child can be born with heart issues, just like Carly's. Anyone can develop leukemia. Many children suffer from cognitive impairment. You don't have to have been born with Ds to have any or all of these issues. Get a clue!

Carly is happy, loving, forgiving, eager to please, smart, witty, silly, non fearing, one of the bravest little gal's I have ever known. Don't get me wrong. It's not always wonderful. She, like other children has bad days. She can be naughty, stubborn as all get out, sassy and disobedient. She is so much more alike, than she is different from all kids. Again, get a clue!

I suppose, it's due to the fact that people who aren't around a person born into this world with Ds., just don't know anything about it. They don't take the time to educate themselves on it. Why would they, if it doesn't effect their lives? At any rate. I hate this phrase,"suffering from Down syndrome".

It's really interesting to me when we are out and about with Carly. We encounter people in stores, at parks, restaurants and so on. Some do stare at us. Some even give us dirty looks. The dirty looks usually come from little old ladies. Can you believe that? Some people have actually asked "does she have Down syndrome"? I say, "yes, she was born a child with Ds". I've even heard this as a response, "really? she doesn't really look like one because she's cute." Can you believe that?! Then there are those who really have no idea that Carly was born a child with Ds. Most people just marvel over her. Usually, I offer the Ds portion up after I've been asked how old is she? Carly is very little. She does not look like a 7 year old. Most people think she is 3 or 4. So, when I mention that she is indeed 7. Their eyes about pop out of their sockets. Sometimes, I go into the whole explanation of why she is so small. I tell them that she was born with Ds. I tell them of her health issues too. To that, most shut their mouths. Like maybe they've just opened Pandora's box or something. Once in awhile, they are curious. They even ask questions. That's OK with me. I would rather they ask me questions and LEARN a bit about our kiddos. Like I said. They are more alike than they are different.

Last week, Ashleigh had a delivery dropped off by the Fed X man. Carly and I were outside. She was jammin' to Miley/Hannah that happened to be playing on the boom box. I signed for the package and the guy says to me. "Oh she's a doll. What's her name?" I told him thanks and clued him in on her name. He went on to tell me that he has a brother who is 47 years old that was born with Ds too. We talked a little. I found out his brothers health is slipping. Up until the last year, he was healthy as a horse. This guy absolutely loved Carly. He went to his truck and came back with a pencil bag full of goodies for her. Most likely, we will see him again today. Brad has a delivery expected at some point.

So, I suppose it all boils down to the fact that people just do not understand what Down syndrome is. People don't understand how those who are born with Ds, don't necessarily suffer any more than anyone else born into this world. But, for a news guy/gal to make a stupid comment. Well...they need to get a clue!


Stephanie said...

Wow, there you go, well said.

Lacey said...

I was horrified when I heard this story, so sad. I do think its ignorance. Even nowdays. People that see Jax that know someone with DS just goo over him. Most other people don't even know he's DS, they ask about the oxygen. I don't know how to educate people better, but it definitly needs to be done.

Kim said...

Well said....Mattie is far from suffering! People really need to think before they speak especially those in the media.

The VW's said...

I hate when I hear this too! Besides the health issues, which like you said could happen with anyone, I'd say our kiddos might actually suffer less than the average person! They are such a light to this world! Thanks for trying to educate others of this fact!

I LOVE the picture of your sweet girl all dressed up for winter! Too funny and so cute!

Karyn said...

Fabulous post - Thank you for sharing your thoughts on this. I totally agree!

Tina said...

I couldn't agree more with you.....I wish people would actually take a little time to know our children and realise that they are no different from any other child, yes they might do certain things a little later or they might have certain health issues, but like you said, which child can't have the same problems that we as parents might be facing.

Unknown said...

I agree with every word of this post. I just don't get it. I am a little frustrated with society right now with their ignorance regarding DS. Yes, I can educate until I am blue in the face, but somehow, today, I feel defeated by society.

Thanks for the wonderful post!

Anne and Whitney: Up, Down and All Around said...

thank you for the wonderful post - well said! :)

Ria said...

Great post! Very well written. It is an annoyance of mine too when people say "suffering from DS" or "he doesn't look like it". Sigh. Can we email that newscaster and enlighten him?

ds.mama said...

Can we call the station? Your post speaks to so much of what we all have to deal with. It does get frustrating sometimes. Guess we have to change the world one person at a time :-)