3/21 – World Down Syndrome Day!

March 21, 2012

Today is World Down Syndrome Day – a day to raise awareness, to learn something new, to show a little extra support to the members of our communities who have Down Syndrome!

Several weeks back I announced that we would be offering a free family photo shoot to an area family affected by Down Syndrome in exchange for them helping us raise awareness by sharing their story. We received lots of emails from lots of amazing families. There were a lot more families than I expected…and the stories were a lot more amazing than I expected! Everyone had a different story to share, tales of diagnoses, of acceptance, of ability, of pride and always, always stories with lots of love!

It was nearly impossible to select a family, but we did! Then, this past Friday I was reviewing my schedule and I had an opening for this Monday…so you know I had to call a second family! Thankfully they were able to make it work last minute!

So today, I’ll introduce you to two families and two awesome kids.

This is Sierra, she is 12-years-old and has a wickedly awesome personality:

And this is Max, he is almost 2-years-old and has the coolest hair I’ve ever seen on a baby:

If you know me or follow this blog at all you know there are 2 things in life that bring me immeasurable amounts of happiness: puppies and babies. If there is anything that can bring me more happiness, it is red-headed babies.

Anyway… Later today I’ll share more photos from these sessions and some thoughts from each family.

For now, I’ll share my own thoughts.

We chose to offer these sessions in conjunction with the awareness day. I was reading about the day and it’s slogan for the year was “Do something extra.” I liked that idea. It can be hard to figure out what a day like this means to you – it is certainly something different to everyone. So I liked the idea of “Do something extra.” That’s easy enough right? Just one thing, one step, one decision and you’ve done something extra. For me, that meant doing what I already do – photographing amazing families – and adding something extra. Thus, the free session offer and the info for the blog!

I realize doing something extra might not be that easy for everyone. We don’t all have a person with Down Syndrome in our lives. But you can still make a difference! And I’m going to help you…

Here we go:

1. Learn something new!

I’m a firm believer that education is the solution to most all problems. So let’s learn some things about Down Syndrome, shall we?

First of all – it’s a Syndrome. A Syndrome is not a disease…it’s…a syndrome. It’s also not quite as “rare” as you might think. There are over 400,000 people with Down Syndrome in this country alone and 1 in 691 babies in our country is born with the syndrome. It is in fact true that the chances of having a child with Down Syndrome increase greatly with the age of the mother. But its worth knowing still that because younger women make more babies, the majority (80%) of children born with DS are born to mothers under the age of 35. Hopefully that answers the “but those parents are so young…” question.

So what is it exactly? Down Syndrome results from a person having a third copy of the 21st chromosome. (Thus the awareness day being 3/21.) That extra genetic material may result in certain physical features, a range of medical conditionsĀ  (like heart defects or hearing issues) and varying degrees of cognitive delays. But like any syndrome, the characteristics vary widely from person to person. Want to do something extra? Remember that it isn’t fair to assume anything about a person’s physical or cognitive abilities just because they have DS.

2. Don’t assume what was true then, is true now.

Progress is being made in treating effects of Down Syndrome. Big progress. A few decades ago, those with DS had a considerably shorter life span. Today, the life expectancy is 60 years and growing! Decades before that, it was assumed those with DS had to be institutionalized to some degree, or sent to a special school. Today, those with DS live with their families, attend main stream schools – often integrated into main stream classrooms – and contribute to society. Remember that progress is always, always being made. Don’t assume anything that you learned then, applies now. Expect that things are always getting better.

3. Watch your mouth.

Language is one of those things that for some people, is a hot button. Other people seem to not care one way or another. As you might guess…I’m one of those hot button people. So if you really want to do something extra today, make a commitment to improve your language. It won’t happen over night. Old habits die hard. But try. Be conscience of it. Here’s how…

Person first language: The cardinal rule of watching your mouth. Always remember that a person is a person. Not a disease. Not a syndrome. A person. So put them first: A child with Down Syndrome. Not – Down Syndrome child.

Think about it this way – if your neighbor lady was battling breast cancer, how would you express that to a friend? Would you say, “Breast-cancer neighbor lady?” Or “That neighbor lady is breast cancer?” Nope. You wouldn’t even think of that. So apply the same rule to Down Syndrome and any other developmentalĀ  or physical disability.

Ditch the “R” word before I wash your mouth out with soap.

Mental retardation is an actual diagnosis. It is a separate diagnosis from any other diagnosis. Down Syndrome is not Mental Retardation. Cerebral Palsy is not Mental Retardation. Irritable Bowel Syndrome is not Mental Retardation. Certainly you could have any one of those and have mental retardation. But one does not equal the other. If you see someone, and that someone speaks, looks, acts, walks differently than the norm – don’t assume they have Mental Retardation. Would you assume a person with a stomach ache has Irritable Bowel Syndrome? It’s fair to assume that person has a stomach issue. And it might be fair to assume that a person has a cognitive delay, speech trouble, or a physical impairment. It is not fair to assume they have Mental Retardation.

It isn’t an adjective. It is not a synonym for stupid or incapable. So unless you’re saying, “This here child has been diagnosed with Mental Retardation” than hows about you just don’t use the word? There’s no reason. We have plenty of other words. I’ll be happy to teach you some new ones if you’d like. My personal preference is to go with “Ridiculous.” Starts with an “r” so it will help you transition out of that ugly habit. Try it: “This is whole thing is -ridiculous-” “My teacher is -ridiculous-” See, got your point across and you didn’t offend someone’s daughter or brother or favorite parishioner.

Same example about the neighbor lady applies here. If you get pulled over for speeding would you ever yell “This is cancer!” Um, no, you would not. And again…the rule applies to a lot of other things. If the word is meant to describe a person, or a person’s health, a person’s diagnosis, a person’s sexual orientation…then show some damned respect and don’t use it to describe a crappy situation or an idiot you’ve just encountered.

Be cooler than that. You can be. I know it.

4. Play for the same team!

We’re all somebody’s child. Most of us are somebody’s parent. We’re all the same team here, okay. We’re all just trying to survive, maybe to succeed, maybe to grow and raise a few new people. So show some support because if there’s one lesson we’ve all learned, it’s that this gig ain’t easy, baby! It doesn’t matter what hand life or the Lord has dealt you, it just ain’t easy.

So smile, when you see another parent in the grocery store. Encourage one another. Be accepting. Be patient. A knowing, “I’ve been there, I’ve got your back” look thrown in someone’s direction goes along way. Suspend judgment.

So there you go, my 2 cents (was more like 2 bucks, I know…) for the day. I hope you learned something. I hope you scratched your head and wondered if you could make a change. I hope you’ll do something extra. That’s the cool thing about this day – there’s no set guidelines for acknowledging it – so do what works for you. Get out there and do something extra. Do something extra in the name of acceptance, of encouragement, of hope, of celebrating ability, of smiling more and judging less, of making the most of everything you’ve got…and you will have done something in the Spirit of World Down Syndrome Day!

Peace and love my friends – Come back later to hear from our awesome families!!

(If you found your way here by looking for Special Needs Photography info, please search the phrase on this blog or visit our website www.maggiemedemaphoto.com and click the Special Needs tab. We like everyone. We photograph everyone. We’re pretty flippin good at it. End of story.)


COMMENTS

Care to Leave a Comment?

Your email address will not be published. Required fields are marked: *