Sunday, October 28, 2012

Down Syndrome Self Advocate

So this morning I stumble out to the breakfast table to find a very weepy Charlie sitting in front of untouched eggs.  Ray explained he was feeling sad because a certain take-out container from the restaurant was sitting on the table empty.  You see, it had been filled with the extra chips from dinner last night.  Charlie had very proudly carried it home, and I guess he had planned to eat those chips later.  I did not know that, and did not think a thing of it when I mindlessly munched those chips up last night after the kids had gone to bed. 

Now, you have never perpetrated an act so low until you have broken Charlie's little heart and made him cry.  Charlie... oh, he is such a sweet, sweet soul.  He does not have a social filter on his feelings that causes him to temper what he feels to either a) not act in a way that is inappropriate, or b) act in a way that he feels will be to his advantage.  He just feels what he feels openly and honestly.  Now, he does moderate his behavior when he is not in that place of raw emotion, like being a well behaved kid at school.  I am just saying when an emotion washes over him, it bubbles up and comes out exactly as he feels it whether it be exuberant joy, deep fear, or broken hearted sadness.  Oh boy, I tell ya... by the end of my conversation with him this morning as I confessed my transgression, his deep hurt so evident in his tearful little face, I had promised him any treat he could possibly imagine from the store after church today, and if that hadn't worked I probably would have promised him any toy from the toy store and let him watch cartoons all day long if that is what it took to help him feel better.  I felt that bad.  I didn't have to promise all those things though, because he forgave me sincerely and quickly, and then skipped off to eat those cold eggs.  By the end of breakfast he was offering me chips from the cupboard to help me feel better!  He is a child full to the brim of love and compassion, for people big and small, and for animals of all kinds.  It flows out of him so freely.  When I ask for his forgiveness and he gives it, I know I am forgiven.  Deserving or not.

This whole experience was topped this morning by an open letter I read posted by a man who has Down Syndrome named John Franklin Stephens.  He wrote the letter to a person named Ann Coulter (don't know who she is, but she is apparently a well known political "talking head" type of personality--you can google it) who had tweeted something about the president being a r*tard.  The letter is astounding.  Frank, honest, witty, and full of compassion.  Oh, Ann Coulter well known public person, my prayer for you or anyone in the public eye using the r-word is that you truly would have the opportunity to be changed by people like John Franklin Stephens--by the sincere forgiveness and compassion of people like my Charlie.  To have your heart completely altered by a person with so much to give while at the same time being utterly persecuted by the world at large.  Persecution with a 90%+ rate of pregnancy termination for prenatally diagnosed babies with Down Syndrome in the developed world, with routine institutionalization from birth in many less technology equipped countries, with name calling, with belittling, and dis-compassion.  Why do I even need to blog about this stuff when people like John Franklin Stephens hit it out of the park all on their own.  Awesome.

I got this letter from The World of Special Olympics Blog.  The Huffington Post has an article about Stephens as well.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are – and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.

A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia

I know there is little point in comparing Charlie, age 6, to John Franklin Stephens, age 30.  So much will change for Charlie, and like lots of Down Syndrome advocates point out, being "always happy" is not a trait of Down Syndrome, just a stereotype, just like being always compassionate is not something we can expect of Charlie for the rest of his life.  What astounds me is the way John is dealing with this debacle.  He signs his letter "A friend you haven't met yet." John has never had an easy time of life, neither has Charlie, but look at the grace for which they apply to their circumstances.  Look at these two people, and many more besides, who struggle, who are lowly in the eyes of the world... look at how they shame the wise.  These lives are worth living, folks.  They are worth knowing, and loving, and cheering on, and including in the community.  They are worth the slow, drawn out moments it takes to get to know and learn from them.  Sometimes I think the astounding ability Charlie has for forgiveness, for compassion and really feeling life in an honest way, is related to his cognitive delay, the way his little mind gives up memory, is slow to comprehend, and simply forgets.  How easy life would be to be able to forget the sting of hurt, to forgive because you could not remember the offense, to not worry because you do not understand the full implications of your life.  And still, does God not look after Charlie?  And Ann Coulter?  And me?  I thank God I have Charlie to show me a higher way.  An honest and compassionate way.  And I am thanking God for John Franklin Stephens.  I am a new fan.

Friday, October 26, 2012

School Update

I feel obligated to post.... something.  It has been an overwhelming month.  Nothing I can name specifically, but the writing about Down Syndrome, mothering, boys, life... that energy is just, I guess, scattered right now. 

Charlie is doing awesome.  Healthy, loving school, making friends, catching on.  We've seen amazing changes in him lately that we did not expect... this introvert kid who hides in his room when people come for dinner.  He is becoming more confident in social situations.  We had our entire band over for dinner the other night, and Charlie jumped right in with the other kids, noise and all, played with them, interacted, even attempted communication (which in the past he seems to avoid except with family), and had a great night.  We see this same thing emerging in other situations, and it is so surprising.  Charlie is a watcher.  He watches to learn.  He watches to see if something is safe.  He watches to see how to participate.  Well, anyway, in Kindergarten he has as yet been very reserved, very watchful, and I think, learning a great deal about how to hack it as a regular kid from his the peers in his mainstream classroom.  He learns so slowly with academics.  His genius is really in the social area, and he is soaking up so much from his classmates.  They love him, too.  High fives and hugs all around at the end of the day.

So that is Charlie this month of October.  Emerging.  You know, when he was a baby I worried about his future.  I admit it.  I did.  But, that worry is so far from me now... I look forward to it.  He may not become a man of prestige in worldly standards, but he is going to be content, loved, satisfied in any circumstance. 

Monday, October 15, 2012

Down Syndrome Awareness: The Experimental Child

Ah!  No time to blog, guys.  Really, I should be in the shower.  Ah well.

I was looking back at a Down Syndrome Awareness Month post from a couple years ago, about the time Miles was due to be born (and then wasn't born until mid November... little stinker!).  So much has changed.

Charlie is our first born... you know, the Experimental Child.  And Calvin, well I guess being our first "typical" child he is Experimental Child Number 2.  As parents we do a lot of head scratching, don't we?  We read the books, we examine our hearts, we pray.  In the blog from a couple years ago I shared that I felt a lack of attachment with Charlie.  At the time he was not calling me mom, he was calling me Kim, and while he loved to cuddle, he was not seeking out hugs or chances to play with me... not competing with his brother for it, I guess.  Conversely, Calvin was very attachment seeking... maybe attachment demanding is a better way to say it!  So, I blamed Down Syndrome, as I often do, and resolved to work investing in some attachment.  Well, it either worked or was a stage, because when I read that a couple days ago I was totally surprised... surely this is not the cuddly guy who draws me into his games and skits all the time and calls me Mommy?  My second thought was, Wow, that is exactly how I feel about Calvin right now.  The common denominator?  When I wrote that about Charlie, he was four years old.  And Calvin?  He's four now.  A Down Syndrome thing?  Or just a stage and age any kid goes through as they grow and differentiate who their own "selves" are (that there is some psychological speak for ya!).  Sometimes they demand our attention, sometimes they don't.  Either way for a hug seeking Mommy, those "I don't need you, 'cause I'm a big kid" stages are hard! 

Oh Down Syndrome!  You take so much blame!  This kid, really, he is so "normal" in many respects... but being Experimental Child Number 1, well, sometimes it's Experimental Child Number 2 who adds the truer perspective in hindsight.

Experimental Children Numbers 1 & 2 pull, while Hypothesis Test Child pushes.

Friday, October 5, 2012

Down Syndrome Awareness Month

Oh yes it is!  Time to be aware!

I've many friends blogging all month, every day in honor of Down Syndrome Awareness month.  Others are posting daily tidbits and photos on Facebook.  I am well aware, but I will tell you, I am loving seeing all these beautiful faces, fun facts, wonderful reports. 

I am doing what I can, but I am afraid we are too busy these days for daily blogs... still, I want to play, too!  So, in addition to some fun little facts I am posting on Facebook, I will try to re-post some past blogs posts about Down Syndrome, and if I can, paint a bit of a picture of what Down Syndrome is like in the context of a family.  I like what a friend said, "Our life does not revolve around Down Syndrome, but it is something that affects us every day."  

And that said, here is a little Down Syndrome Awareness for you today...

Charlie is, more than anything else in this family, a brother and a son, plain and simple.  He is a great brother, and so blessed to have his younger brother Calvin so close in age.  They are two peas in a pod, those silly boys.  I love how in this picture Cal and Charlie are looking up in the camera, and Miles is looking at them.  Miles wants so much to do every little thing they do, and Calvin and Charlie are so, so good about accommodating that desire.  "Calvin, hold my hand in the parking lot so Miles sees that it is what we do."  "Charlie, show Miles the way you hook that train track together so he can do it himself."

Charlie may be behind in areas, but to his brothers, he is just Charlie.  I think Calvin might be starting to get what Down Syndrome is, but it is difficult because Charlie is first in the line of siblings, he has always been who he is to his bros, and they have a play language and relationship that is as natural and dependable as the sun rises each morning.

I guess you could say in our family Down Syndrome is natural, just a variation on normal.  We roll with it... and while I occasionally get accolades on my "exceptional" (because of Charlie) mothering, the truth is, anyone can do this.  We do.  And we are still smiling.  :)
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