The Battle For Something Beautiful Continues – World #DownSyndrome Day

World Down Syndrome Day Logo

Today is March 21, also World Down Syndrome Day. I’ve written about World Down Syndrome Day before, in 2013, 2012, 2011 and my personal favorite 2009. They’re all worth a read but if you could only read one I’d probably say it should be 2009. The United Nations General Assembly officially declared March 21 as World Down Syndrome Day back in 2011, even though people had already been observing it for a few years before that. World Down Syndrome Day is recognized on this day because being the twenty-first day of the third month, it is symbolic of a third copy of the twenty first chromosome, or Down syndrome. Some of the goals of the day are to raise awareness, to educate, to promote acceptance, and to promote inclusion.

You’ve probably noticed that google changes it’s little doodle thingey all the time. Yesterday it was an animation of watering a stick flower for the first day of spring. A number of people requested Google use an image for today’s doodle, for World Down Syndrome Day. It looks like this.

Wdsd Google

I don’t know how many asked. I do know that this is not the first year they’ve asked. I logged in this morning and hit Google. Didn’t see the image. As Google they could make such an impact just by putting that doodle up for one day. How could they make an impact? Because it would get people looking at it and wondering about what it stood for. That’s where the awareness comes in. As with any other cause, not everyone would jump on board, obviously. But more people would be aware. But yet again, Google chose not to use the doodle. It’s their choice to publish doodles on random days with no meaning, and yet ignore an important socially relevant cause involving real people. It leaves me disgusted, but that’s a feeling I’ve grown accustomed to in my quest for “Something Beautiful”.

“Something Beautiful” is the name of a song. These are the lyrics.

Tell me what hurts the most,
Where you feel it in your bones.
Is this how you pictured yourself?
Do you feel like a ghost?
Half alive and so unknown?
Is this how you run from yourself?

And the undertow rushes in,
Pulls you out, pulls you in.
Spinning you all around,
Spinning you upside down.
And you don’t know which way is up,
And will this ever be enough
To make you whole, to fill your soul,
When all you want is

Something beautiful
That they can’t take away,
That no one can ever touch,
And nothing can replace.
Something beautiful
That you can call your own.
When the world shows its ugly side
All you want is something beautiful.
Something beautiful.

Can you touch the way you feel,
Or does it only fade to gray?
Is this how you cripple yourself?
And when the sky is caving in,
Crashing down from within,
Is this how you, you lose yourself?

Because you don’t know which way is up,
And will this ever be enough
To make you whole, to fill your soul,
When all we want is

Something beautiful
That they can’t take away,
That no one can ever touch,
And nothing can replace.
Something beautiful
That you can call your own.
When the world shows its ugly side
All you want is something beautiful.
Something beautiful.

Some things will never, will never, will never change
Some things will never, will never, will never change
Will never change
Unless you believe in
Something beautiful
Something beautiful
When all you want is

Something beautiful
That they can’t take away,
That no one can ever touch,
And nothing can replace.
Something beautiful
That you can call your own.
When the world shows its ugly side
All you want is something beautiful.
Something beautiful.

WW - Fun at the beach after winning the silver medal! WW - Fun at the beach after winning the silver medal!

 WW - C And Dobby WW C After Bowling Match

C Surfing

Something Beautiful is also what what I envision life and society should be. It’s a vision that I advocate for on a daily basis. Something Beautiful is a world that is better place for people with with Down syndrome like my son.

It’s a world where my son won’t be judged by how he looks or what his abilities.

It’s a world where people won’t stare because he looks different.

It’s a world where kids won’t literally turn their back and ignore my son when he tries to talk to them because they don’t understand what he’s saying.

It’s a world where the parents of those children will teach their children that everyone deserves to be treated with respect and as a human being.

It’s a world where people won’t presume he has no feelings.

It’s a world where people will recognize that individuals with Down syndrome have potential and can do many things.

It’s a world where my son won’t sit in a doorway watching other kids outside playing, surely wishing he was out there too.

It’s a world where people are accepting of others that are different.

It’s a world where people don’t sling the word retarded around casually, without care that they aren’t using it correctly and that they are hurting others by using it that way.

It’s a world where my son and others with Down syndrome will be treated like people, not like a condition. My son is a person, he is not his diagnosis.

If society ever gets to the point where it’s anything like what I envision and fight for, it will surely be Something Beautiful. For us to get there, awareness must be raised. Standing up for beliefs must occur. Voices must be raised before they can be heard. Everyone can make a difference. Yes, everyone. Wondering how you can make a difference? It’s easy. Two steps.

  1. Learn more about Down syndrome.
  2. Share what you learn.

Not a single day goes by that I don’t listen to this song. Not a single one. It’s become a mantra of sorts for me.

For me, and families within the Down syndrome community, every day is World Down Syndrome Day. Every day I fight for my son. It’s a tough fight. It can be emotionally bloody and it can hurt like hell. But I will never let it break me. I won’t let up until I’m dead or until we achieve Something Beautiful.

I leave you with the acoustic version of Something Beautiful, with the permission of the band Oleander.

A big thank you to Oleander, for graciously giving me permission to use this song in my post. And for always making amazing and relevant music. Something Beautiful is available on the Oleander website and iTunes. I make no money if you purchase it, by the way, I share it because it’s awesome and it has incredible meaning.

If you’re still here, I saw an awesome videos for World Down Syndrome Day that I want to share.

Our Kids Are More Alike Than You Think – @WorldDSDay World Down Syndrome Day – @NDSS

World Down Syndrome Day Logo

Today, March 21, is World Down Syndrome Day. The United Nations General Assembly officially declared March 21 as World Down Syndrome Day back in 2011, even though people had already been observing it for a few years before that. World Down Syndrome Day is recognized on this day because being the twenty-first day of the third month, it is symbolic of a third copy of the twenty first chromosome, or Down syndrome. Some of the goals of the day are to raise awareness, to educate, to promote acceptance, and to promote inclusion.

Here are five things that my son is not.

  • He is not a Down syndrome person. He is a person with Down syndrome. I’m not called a hazel eyed person, I’m a person with hazel eyes. People should never be identified by their abilities or disabilities. People are people and should be thought of and treated as such.
  • He is not suffering from Down syndrome. It’s not a disease. It’s not catchy. It’s a chromosomal condition.
  • He is not always happy. He has the whole range of feelings, just like you and I.
  • He is not always a saint. Yes, he gets into his own fair share of mischief. Really.
  • He is not completely different than other children his age. He is far more alike then different. He loves music (Hinder and Papa Roach are his two favorite bands), television, video games and snacks.
CJ at the Dentist

Like most kids, my son is not a big fan of the dentist. But like most kids he sure can rock a pair of sunglasses.

And here are five things that my son is.

  • He is compassionate. He’s the first one with a hug if he senses you’re feeling down.
  • He is intelligent. He can figure out any tv, stereo or video game console within minutes.
  • He is sensitive to other people’s needs. He knows when someone is feeling down and is the first to offer a shoulder.
  • He is impatient. Just like any other 13 year old, he rolls his eyes and sighs.
  • He is a tease. He wipes his kisses off, just so you will give him another.
CJ at the Philadelphia Zoo

Having fun at the Philly Zoo

Everyone can make a difference. Wondering how you can make a difference? It’s easy. Basically, it’s a two step program.

  1. Learn more about Down syndrome.
  2. Share what you learn.

Three steps actually, the third step being Repeat.

For me, every day is World Down Syndrome Day. Every day I fight for what’s best for my son’s well being, and to make sure that his rights are respected. It’s a fight that is as challenging, strenuous and exhausting as any fight in a boxing ring. It can be emotionally bloody and it can hurt like hell. But I will never let it break me. here’s a verse in the song Still Swingin by Papa Roach that sums up how I feel about my battle as a parent.

We’re just living for today
Keep our light on in the haze
Yeah, forever we will stay
We are the ones still swingin’
We are a beacon in the dark
A lighthouse risen from the heart
We’ve been here from the start
We are the ones still swingin’

It is my hope that some day society will be a different place. A compassionate place. An accepting place. A safe place. I hope I live to see that day. More importantly, I hope my son lives to see that day. But until that day arrives I’ll be right here, still swingin.

I’ve written about World Down Syndrome Day before, in 2012, 2011 and my personal favorite 2010.

Dr Seuss once said some very wise words that are very relevant.

Suess On Getting Better

You can make a difference just by learning more about Down syndrome and sharing what you learn with others. The National Down Syndrome Society offers some great free resources that can help you learn more about Down syndrome. Just click on the button below and you’ll be taken to their page.

GRAB THIS BUTTON

More Alike Than Different – Empty Containers In The Fridge

My oldest son frequently puts bottles, containers and packages back with almost nothing in them. You know what I mean – a carton with less then one sip in it, a potato chip bag with 2 chips left in it. Well, today I opened the fridge and guess what I discovered? An empty orange juice bottle with less then one sip in it.

Down syndrome - More Alike Than Different - Empty Bottles

The thing is, my oldest son was still sleeping. And my youngest son was holding an empty cup, licking his chops telling me it was “good”. So not only is he resourceful like I mentioned last week, but he puts empty things back too. I’m telling you – people with Down syndrome are more alike than different.

More Alike Than Different – I Can Be Resourceful

We keep my youngest son’s games out in the living room, near our movie collection. That way he needs to ask us when he wants to play a game. Plus, he isn’t the gentlest with his games, so by keeping them out of his room we hope to minimize the scratches that inevitably appear. My son actually wears out his favorite DVDs and games long before he tires of them. Right now we’re on our fourth Wii Sports game, for instance. Anyway. This morning he got up before us. He did not ask us for a game, or the Wii controller, which is also kept in the living room on a charger. We got up a short while later and heard him in his room, playing with the Wii. I wondered how he got his game, and as soon as I walked into the living room I knew the answer to that question.

Down syndrome - More Alike Than Different - Climbing

My older son was a climber when he was younger. See. people with Down syndrome are more alike than different.

Wordless Wednesday – More Alike Than Different – Fibbing

For years I have heard all sorts of things about people with Down syndrome. I’ve been told things like people with Down syndrome aren’t capable of saying something that isn’t true. That’s right, I’m talking about fibbing. I have one word for you people – BULL! My son is a good boy, but let me assure you that he is very capable of telling a fib.

Here’s an example.

Yesterday I told my son that he needed to clean up his room because it was bed time. He was less than pleased and grumbled a little, but started cleaning his room. A few minutes later he came out and told me that he was done, and that he was going to the potty. Now in our house we never say no when it comes to using the potty, since we’re still working on using the toilet for pooping. Five minutes went by. Ten minutes went by. Things were quiet. You know what I mean, the too quiet kind of quiet. So, I walked over to the bathroom and peeked my head around the corner. This is what I found.

Wordless Wednesday - Down syndrome - More Alike Than Different - C with the Ipad on the Toilet

One fully dressed child sitting on a closed toilet with his pants up playing an app on the iPad.

See! I told you! People with Down syndrome are more alike than different.

Thanks for stopping by! If you have a picture up for Wordless Wednesday, leave your link below! Then head on over to From Val’s Kitchen and Here And There

Wordless Wednesday – A Thought On Down Syndrome Awareness Via Dr Seuss

I saw this banner at the Philadelphia Zoo a couple of weeks ago. We were there for Down Syndrome Awareness Day. Now I know that the zoo has a whole Seuss and Lorax theme going on, which is probably why the banner is there. But for me, the banner says more then that. The banner perfectly describes what needs to happen in society in order for society to be a better place where people like my son are welcome and included.

Suess On Getting Better

I’ve said it before but it bears repeating. October is National Down Syndrome Awareness Month. Every day is Down Syndrome Awareness Day for me. I love my son and will never give up fighting to be sure he is the happiest and best person he can be, and a part of society, along with others.

I love you baby! You are beautiful!

C At Philly Zoo

Thanks for stopping by! If you have a picture up for Wordless Wednesday, leave your link below! Then head on over to From Val’s Kitchen and Here And There.

A Boy And His First Magazine

Thomas & Friends Magazine Cover

My youngest has limited reading skills. But that doesn’t mean that I limit his access to books and other things to read. One of his most favorite things in life is Thomas & Friends. A couple of months ago I saw a great offer for a subscription to a kids magazine I thought he’d enjoy. Yes, that’s right, it was for a Thomas & Friends magazine. It was ridiculously inexpensive, so I ordered it. It said it would take a while for delivery to start, so of course I promptly forgot all about it.

Every day when my youngest gets home from school he likes to get the mail. Perhaps he gets it from seeing my Dad get the mail. My Dad LOVES to get the mail, his ring tone on my cell phone is the Blue’s Clues Mail song. Anyway. CJ and I always walk to the mailbox together as soon as he gets off the bus. I stand by while he opens the mailbox and gets the mail, then he carries it inside. It’s part of our daily routine. So yesterday he got off the bus and headed for the mailbox. He opened the mailbox door and took out a small pile of envelopes, underneath which was a very conspicuous Thomas & Friends magazine.

When I saw the reaction on his face I knew that taking the time to go through that list of all magazine prices had been a good move. He grabbed it out from under the envelopes, letting all of the mail fall to the ground. No big deal, noone actually rushes to open bills anyway, right? He ran in the house with the magazine and I picked up the mail and followed. I found him in his room sprawled out on the floor with the magazine. These are the moments that I love to see, because they are just so typical. My 16 year old always snags his Guitar magazine in a hurry. And I remember watching the mail when I was younger as well. It’s just proof that people with Down syndrome are more alike than different.

Miscellaneous Mentionables

news newspaper bundle

I frequently receive email from companies asking me to share news or discounts with my readers. Each week I’ll gather the best requests and share them with you here.

Creative Arts and Abilities presents The FOREVER FRIENDS SHOW

Chris Burke, the actor with Down Syndrome best known as “Corky” in “Life Goes On” has a new, inclusive, kids web TV show which can be viewed for free at the link below.

Forever Friends is a unique and exciting new inclusive children’s show targeted for all kids ages 3-7. It stars Chris Burke, the actor with Down syndrome best known as “Corky” on the hit ABC-TV series “Life Goes On” and Joe and John DeMasi. Forever Friends brings a message of love, friendship and inclusion as children follow Chris, Joe and John, their feline friend “Feedback” and their talking computer “Newton” on
their various and fun filled journeys as they sing along, sign along, celebrate abilities and teach kids that we are all more alike than
we are different.

FUN and EXCITEMENT for ALL KIDS!!!!
Watch for FREE at www.ForeverFriendsShow.org
SING ALONG! SIGN ALONG!! CELEBRATE ABBILITIES!!

#321 World Down Syndrome Day Is The Reason Why This Post Is Short And Why I’m Busy

World Down Syndrome Day logo

Today is World Down Syndrome Day.

Though celebrated since 2006, this is the first year the date is officially recognized by the United Nations. This date, the 21st day of the third month of the year, symbolizes the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome.

I imagined I’d have a lovely, wordy post for you but alas I do not. Why not, you say? I have a Psychology midterm tomorrow. Also, I have to submit a thesis and outline for a major speech. And work on a research paper. Life sometimes goes in directions we may not always plan or want them to. You adapt. Like Dory from Finding Nemo, you keep swimming. I’m swamped right at this time, with school, non-profit, other community things, and my blogs. I didn’t plan my day to day schedule to be so full, but I wouldn’t have it any other way. Why? Because it’s all being done for reasons. I have actual goals that I’ve set up to align with a vision I have. I want to use the college courses I’m taking not only for myself, but also to fulfill my dream of being an effective advocate for my youngest son and others with Down syndrome. I didn’t plan to have these hectic days, but here they are and I’m just fine with it. Although sometimes I wish there were a few more hours in a day. Just sayin… Sometimes extras are a good thing. Like with cheesecake. Or chocolate covered Oreos. Or a chromosome.

Grab This Button

I didn’t know that my youngest son was going to have Down syndrome before birth. Had I known I wouldn’t have changed a thing, but that’s another discussion. He has made me a better woman, a better mother, a better advocate and a better person all around. He has given me so many things that I didn’t know that I was looking for or missing. I love him with all my heart and soul and wouldn’t change a thing. To me he is beauty, he is innocence, he is love. Sure, we have our challenges, but having him in my life is worth every one.

I went to Washington DC at the end of February to participate in the Buddy Walk On Washington, a two day advocacy event.

This is the New Jersey group with Congressman Jon Runyan.

Buddy Walk On Washington Runyan Group

This is the New Jersey group with Congressman Chris Smith.

Buddy Walk On Washington Dc Chris Smith Group pic

I also participated in a two day leadership convention hosted by the Down Syndrome Affiliates In Action while I was there. These two events truly inspired me to pursue my vision even harder and make it happen. Not just for me, but for my son, and for others. People that deserve to have a voice, be heard, have rights, and be treated respectfully.

So I leave you with this video, as I have to finish studying for my Psych exam and be up in five hours. I’d probably write longer but right now the education means something and will impact my vision. I can’t let up. It’s too important for me, and even more important for them. For families within the Down syndrome community, every day is World Down Syndrome Day.

Please help Spread the word to end the word.