World Down Syndrome Day 2014

Today is World Down Syndrome Day. The significance is 3:21, for 3 copies of the 21st chromosome.  I'm supposed to ask you to wear blue and yellow or crazy socks to "bring awareness" to my girl's world...

I'm not going to ask you to. Instead, I'm going to ask you to do three things for me:
1) Be extra patient with someone
2) Smile at someone acting "off" and not like you
3) Record deeply in your core, no matter what someone's neurological structure or chromosomal binding we all want the same thing: freedom to be ourselves and to be respected as a human being.


Usually, my days are wildly different from yours.  My child deals with demons that don't even operate in the shadows of normalcy. Today, I am going to stick a toe in the campaign that usually annoys me, because it's partly true.  "More Alike Than Different".

The reason that it annoys me, is that it encourages the usual oppression of trying to make everyone the same.  We aren't.  And that's a good thing.  We all bring different memories, skill sets, expertise, perspectives, and strengths to everything in life.  This is not bad.  This makes us interrelate and build relationships and societies.

BUT for today, I want to remind you that whether we are good at writing or math or speaking in public or serving those who cannot do for themselves, we all have interests and needs that are similar.  We want to be valued for our unique skills.  We want to be loved because of and despite our flaws.  We want to have friends and we want to live our lives with impact and gusto.  And people with Down Syndrome are no different.

Elise is an odd duck, but you share some of her oddities:

1) Elise loves chips.  She prefers it for dessert, 8 times out of 10.
2) Elise adores hockey.  She disdains figure skating.
3) Elise loves a good action adventure movie.
4) Elise thinks Ironman hung the moon.
5) She loves parties.
6) She loves hunkering down at home for days to get her "strength for life" back.
7) She loves to rewatch her favorite movies to soothe frazzled nerves.
8) Pizza is the world's best invention. 
9) Second to the TV
10) She is a chicken piranha.  She can clean it to the bone in seconds, making it sparkle, and possibly suck the marrow out.
11) She refuses to wear shoes that hurt.
12) She LOVES to observe and admire shoes and shop for shoes.
13) She loves computers.
14) She loves to swim.
15) The beach fills her soul with pure peace and joy.
16)  Elise has a memory like a steel trap.
17)  Elise's mental state is closely related to the weather outside.
18) Elise loves foreign foods.  Mexican, Japanese, Chinese, Indian...she likes the interest of spices.
19) She loves to create things.
20) She loves books.
21) She has friends and treasures them.

3

The only blog hop I'm really kinda excited about today:

Fact:  Elise is just like me.  She looks like me.  She has my quirks for good or for ill.  Stubborn, Sensory, and ADHD are all me.  She took my "style" or lack thereof.  Men's shirts and flip flops anyone?  She is enchanted by books.  She giggles over the oddest details in movies.  She reads people easily and tends to judge them on their soul and intentions.

Fallacy:  You can't tell someone they look like a child with physical disabilities or that they are "just like" a child with behavioral disorders, because that would mean they have all the same negatives. 

Nope,  we have the same eyes and strengths.  We have the same stubborn genes.  We have the same issue with "weird" socks.  We are twinkies.  But that doesn't mean that I have her plus +1 gene or all the medical issues or speech impediments.  And I will take it as a compliment that we are "two peas in a pod"...and so will she until she hits the 30 minutes of teen attitude...because that's all it feels like in the long run anyway.  For as crazy as my mama makes me, I treasure all the "you're just like your mother" comments over the years...even when I was trying to distance myself.


Picture:

 

Last Easter's drive by kissing.  I must have looked like I needed one.  Generally thrilled that somebody caught it.

 

 

Read everyone's 3 here:  http://www.withalittlemoxie.com/2013/03/3-for-21-a-bite-sized-blog-hop-for-big-changes.html

3.21 What Will You Do About It?

You're aware of Down Syndrome.  What will you do about that knowledge?

Today is the annual World Down Syndrome Day.  Chosen for it's date...3 copies on the 21st chromosome.  Numbers that make me happy in a sick, OCD, kind of way...They stand for something pretty huge in my life...and 21 is divisible by 3, with a result of 7 which is a prime number and has recurring religious significance... but we won't get into that today...It just makes me absurdly happy.

I went on a little tear yesterday about Lots-o-Socks Day...And I posted a smart aleck picture of my feet...naked...without socks...and closed it with a nod to one of my favorite sayings/verses: "Beautiful Feet"...and it occurred to me that not only may some of you not get the reference, but it would be such a great subject for today...

Isaiah 52:7
"How beautiful on the mountains are the feet of the messenger who brings good news, the good news of peace and salvation, the news that the God of Israel reigns!"

This verse is speaking about the idea that anyone who brings good news is beautiful.  The "Don't kill the messenger" thing, only in reverse.  In ancient times, not only did they walk in sandals or bare feet, but they were dreadfully gross after any kind of travel and folks had to wash their feet before entering a home or dining with those you had come to visit...so this verse compounds the transformation of the messenger by referencing the messenger's feet.  Not only does bringing good news make the messenger beautiful, but even the filth is gorgeous for it's participation in the travel and hardship to bring that gift of joy...and not just any gift, but the gift of Peace and Salvation. 

If you read the rest of the Isaiah chapt 52, it is talking about freedom of oppression and slavery.  Can you anticipate where I'm going with this? 

People with disabilities is this generation's segregation.  They are the ones that are repressed, their voices shut out, invisible, and abused in secret...with no consequences when the abuse is brought to light.

If I have heard one story of abuse of kids and adults with disabilities this year, I've heard 10.  Kids that have been verbally beat down, kids that have been secured with duct tape, kids that have been shut in bags or closets.  Kids that have been struck by teachers and aides.  People who have been taken from their lives and submitted to group homes' whims, people who have been hurt and killed by bullying or simple brutality.  And I've already addressed the horror of sexual abuse statistics and people with special needs.  All of those words that are highlighted are links to actual news stories...and if you Google, any of those words with Down Syndrome or Special Needs, you literally have endless stories...  I dare you to do it.  Does that make your blood run cold, or what??

These go up constantly.  And nothing is done.  Teachers aren't fired. (There are of course innocent people accused and I'm not saying there aren't exceptions.)  School systems have had multiple "incidents".  BUT WE AREN'T GETTING ANGRY???????  These keep going on!!!!!  And no one has drawn the line and said Gandalf-like, "Here, and no further!!!"

There is the silent abuse done by organizations that simply offer no support.  They refuse or hide behind peace for others or security or liability risks and don't invite those with special needs in...churches, public forums, private schools...you don't HAVE to say "We don't want you, don't come back"...all you have to do is make it too hard for them to want to come back.

In schools, there is the quiet, bumping kind of abuse, where teachers and the administration are ratcheting down the least restrictive environment in such a way that we as parents have to be aware of even how the wording of our kids' goals are phrased, so they can't be used against us down the road and force our kids into self-contained classrooms.

We are making it so difficult for these families, that those on the cusp, are terrified that "those kids" will  have "poor quality of life" and are aborting them before they have the chance to change our world. 

I have referenced the importance of the foot soldiers.  They are not "qualified"...they often don't do anything special but stand in the gap.  They fight for those that cannot.  And they are heroes.

So.  You are the foot soldiers in the battle for RIGHT.  You are aware.  What are you going to do? 

Are you going to flood the school systems with phone calls and mail when you hear of these incidents?  Are you going to get involved in your church to make sure that families with special needs are welcomed, supported?  Are you going to call your friends with kids with issues?  Have lunch with them and listen?  Are you going to give your wheelchairs to those who need them?  Are you going to donate to those adopting kids with disabilities?  Are you going to talk to those kids/parents at the play ground?  Are you going to include "those kids" to your child's birthday party?  Are you going to be a part of this revolution?  In short, are you willing to be changed to make a change?

You know.  You have feet.  Step forward. 

Let us not wallow in the valley of despair, I say to you today, my friends.

And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."

Sound familiar?  Stand up on your feet, whether they have crazy socks on them or they are bare naked.  Bring those beautiful things to your community and say to them with your actions "You have been released from oppression, whether from abuse or ignorance.  And I will be your friend."

And you will be more beautiful than a trip to the spa could have ever made you.

Happy World Down Syndrome Day 2011

I am pleased to wish you Happy Down Syndrome Day!!! I did not know about this last year...gotta love Facebook, huh? There is some excuse for a party every few days... :)

BUT, I as I have taken every excuse to celebrate my girl and "dis" the establishment who tries to scare the Downs out of everybody's life....how much better than a WORLD acknowledgement of their beauty and their magical impact on our lives!?!?

I saw for the first time, the funniest T-shirt this week. "Don't Dis My ABILITY!" I got so incredibly tickled by it!! So to celebrate today, other than my totally awesome giveaway (if I do say so myself!), I decided to list some of Elise's latest accomplishments!

Elise's ABILITIES:
1) Elise can say her last name!
2) Elise can spell her first name!
3) Elise has more than 30 words that she can sight read!
4) Elise can curry a horse
5) Elise can muck out a horse stall
6) Elise can count up to 12 (and then to 20 but it gets a little patchy after 12!)
7) Elise knows the sounds to all the letters in the alphabet
8) Elise can go potty and take care of everything but the fasteners
9) Elise can do simple math
10) Elise can get away with more than any one human should be able to
11) Elise can break steel ball bearings due to her persistence
12) Elise can take her shoes and socks off in 3 seconds flat
13) Elise can put hats on her Playmobil figures
14) Elise can turn on the Playstation, the TV, the audio system, put in a DVD, select it, and watch it with joy
15) Elise can operate my iPod more easily than my parents and my in-laws
16) Elise knows her way around a computer
17) Elise can enjoy a book being read to her with a more magnetic concentration than anyone I know
18) Elise can exude joy at such a magnitude that you can feel it against you "like tall grass"
19) Elise can ask questions in such an abbreviated manner, you comprehend the "Much-ness" of the simple questions
21) Elise can give her love abruptly and completely to random strangers that truly need it and she seems to know, unfailingly, who really needs it!

For those who would like a simple education, THIS is what Down Syndrome is, technically.

For those who want to know what it is like to live with someone with Down Syndrome, here is a quote that quite sums it up for me today.

"The Lord's goodness surrounds us at every moment. I walk through it almost with difficulty, as through thick grass and flowers." - R. W. Barber

I am also going to unabashedly steal and tweak a quote from a friend since the sentiment is more than applicable (Thanks, Renee!):

When I was pregnant with Elise, I was 26 years old. We had a 1 in 1433 chance of having a child with Down Syndrome. We hit the jackpot!