Spread the Word, End the Word

It is no secret that I love my little lady to the moon and back.

 She makes the world a little brighter, a little better, a little simpler whenever she smiles.

She makes  me laugh, she makes me think, she keeps me young and she ages me prematurely.



Her clinical diagnosis includes "mental retardation" but this girl is not a "retard".  She is smart and funny and full of life and joy.

And when you use the r-word to describe anything you don't like or when you think something is stupid or ridiculous, you are making fun of my little girl. 

When you use the word(s) "retard(ed)" you are being disrespectful to her journey in life; mocking her fight to make her life a daring adventure.

My little lady works harder, loves easier, and smiles brighter than anyone else I know.  She deserves respect.

So stop using the r-word.

TODAY.

RIGHT NOW.

Take the pledge to end the use of the r-word and spread the word that using the r-word is hurtful to people with intellectual disabilities.

Fun Run in Washington, D.C. for Research Down Syndrome

You all know that I love to run.  So when I heard about Research Down Syndrome (RDS) starting a new runners program, I was thrilled that I could combine two passions--helping people with Down syndrome and running my guts out.

I emailed the lovely Kate from Trial Run, who I knew would love the Down syndrome/running combination as much as I did, and she took it a step further and convinced RDS and the National Down Syndrome Congress(NDSC) to host a 1-mile fun run during the NDSC national convention in Washington D.C. in July.

How awesome is that?!?

RDS is trying to figure out the level of interest for the fun run, so PLEASE email them at rdsrunners@researchds.org and let them know you think it is an amazing idea and you would like to come join us and get in a little exercise the morning of July 21st in Washington D.C.  The full details are still being worked out, but the more of you that let them know you will be there, the better the run will be.

You don't even have to be a runner to join in the fun--just come walk and hang out and eat some muffins and wear the cool shirt.  The more the merrier!!

All proceeds go to help people with Down syndrome--it's a win-win all around!!

So go ahead, email rdsrunners@researchds.org and let them know you are in!

P.S. If you want to blog about this or share the info on facebook, twitter, message boards, etc; that would be fabulous--let's get the word out!!

The Third Year.

Three years ago yesterday, I got a phone call that would change our lives forever.  Three years ago yesterday, we got the results back from my quad screen test that indicated our little lady had Down syndrome.  A few weeks later, amniocentesis results in hand, the quad screen test results were confirmed.

Since then, October has become a "reflection" month for me.  A time to look back and evaluate how our lives have changed since that phone call.  A time of introspection.

On the day we found out, I felt devastated...and that word doesn't even begin to describe it.

A year later, I felt like I was on the offense--I joined several different Down syndrome advocacy groups and felt the fire to rid the world of the injustice toward people with Down syndrome.  When people would make comments about Miss B or about Down syndrome, I immediately became a mother bear, protecting my little one.

By year two, I was exhausted of being in constant "Down syndrome" mode.  And so I stepped back, and simply enjoyed my daughter and the blessing that she is...We didn't do all of the therapy-homework we were supposed to do.  I didn't read every news article about Down syndrome that came out.  I didn't talk about Down syndrome constantly.  We all just went about our daily lives.

And now, at year three--I am trying to find the balance of the two--being mother bear for people with Down syndrome when necessary, but living life just like any other family would.  As I've tried to find that balance--to walk the line of "same as everybody else, just different than most"--I have struggled.  How do I make a positive change in the world for people with Down syndrome without it consuming my life? 

The push to make the world a better place for my little Miss B has driven me to start a Down syndrome group here in The Village and surrounding towns.  As the President of this new group, I feel enthusiastic and optimistic that we can make a difference.  And I'm excited that, in our little corner of the world, I am promoting inclusion and acceptance of my little lady.  However, despite my enthusiasm, I worry about my life becoming engulfed by all things Down syndrome.  While I want Miss B to have every opportunity to have the good life; I think that part of having "the good life" means that we shouldn't always live in "special needs land" and that we need to be a family first--a regular ol' family--and a "family touched by Down syndrome" second.

At the same time, I have guilt that I haven't done enough for Miss B.  Like the other day when a friend used the R-word and I just let it go without saying anything...I felt like I was letting Miss B down.  Or when I read about all of the different therapies and reading programs and equipment and toys and foods and vitamins and experiences that are recommended for people with Down syndrome--and I know that we are only doing a small fraction of what we could be doing--I lay awake at night worrying that we are failing her.

And so three years later, I have come to the conclusion that there will always be struggles in life--things that make you worry and times when you have to push forward or pull back--and that is okay.  And I've realized that I feel so blessed to have these struggles.  I feel infinitely grateful for the growth and change and learning that takes place as we find our footing on this path in life.  I feel blessed to wake up each morning to my thoughtful husband and three beautiful children.  I feel grateful for the change that Down syndrome has brought into our lives.

And while we don't have it all figured out yet...there is no hurry, we will get there someday.

While our life is not perfect...it is good.

Genetics Lesson.

In honor of Down Syndrome Awareness Month, I thought I'd share a little genetics lesson.

From the National Down Syndrome Society:

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.  

(Nondisjunction is what happened in Miss Banana.  I'd also like to emphasize the point that Miss Banana's extra genetic material comes from either Dr. C or myself...it's not an alien chromosome that came out of nowhere.  Miss B simply got an additional copy of either Dr. C or I's genetic makeup, not a separate "Down syndrome chromosome".  It is the fact that she has that extra genetic material that causes her to have Down syndrome. 

As an example...it's like she got two doses of my stubbornness and one dose of Dr. C's stubbornness...NOT one dose of my stubbornness, one dose of Dr. C's stubbornness and one dose of Down syndrome stubbornness.  Hope that makes sense! 

P.S. We don't know if it was me or Dr. C that gave her the extra chromosome.  And it doesn't matter.)

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

And now we come to the end of our little genetics lesson. 
 
Feel free to ask questions if you have any!

Five Queens.

Every parent looks forward to the future of their child and has hopes and dreams for them.  All mothers want their children to be loved, successful, happy, well liked, and just an all around "good kid". 

And then we have those little "extra" dreams for them...the ones that we know aren't really important but things that we would like to see our children do.  Like not only wanting little Timmy to play football...but secretly, wanting him to be captain of the team, to score the winning touchdown, to hold the school state national record for number of yards thrown. 

We all know these kinds of dreams for our children are silly...that they don't really matter...but I can't think of a single parent that doesn't have them.

I have one of those dreams for Miss Banana.  Not only do I want her to be included in her classroom, but secretly? I want her to be popular.  I want her to have friends, boyfriends, be on the cheerleading squad, sit at the "cool" table at lunch. 

And I don't want her to be cool because she has Down syndrome, I want her to be cool just because Miss Banana is cool, extra chromosome or not. Is that expecting too much?


Is this little dream shallow of me?  Perhaps. 

But it's there.

When Miss Banana was first born, I thought there was no way that little extra-dream of mine would come true.  But after seeing Miss B rock the tests in the interpersonal relationships catagory; it's come back.  And just in the past week or so, there have been girls sporting an extra chromosome that are living that extra-dream. 

Here is Katelyn Simpson, Homecoming Queen for Northwest Rankin High School (Mississippi).

Photo taken by  Kevin Williams
Special to The Clarion-Ledger

And Emily Niedrich, Homecoming Queen for Birch Run High School (Michigan)

Photo taken by Brittney Lohmiller
The Saginaw News

And Sydney Blum, Tarkington High School (Texas).

 
And (the reaction at the end of this video is AWESOME), Mariah Slick from Azele High School (Texas)

 
Or read about Madi Sanju of Desert Hills High (Utah).  The cool thing about her story?  Her sister, also with Down syndrome, was the Homecoming Queen in 2010.
I hope that by the time Miss B gets to high school, these stories are commonplace. 
 
And that my little extra dream isn't so far-fetched after all.

10 Reasons.

If you haven't ever been to a Buddy Walk--you are seriously missing out.  The annual Buddy Walk is one of our favorite family days of the year.  They really are awesome.

Here are my 10 Reasons Buddy Walks are the best.

10.  The T-shirt.  While usually they are pretty cool and Dr. C and I wear them throughout the year with pride, this year, I think they were going more for the "get noticed" factor.  And they definitely got that right.  Dr. C and I decided that we will wear these shirts again when:

a) We decide to go for a nighttime run and all of our other clothes are missing

b) We become hunters and don't want to buy the orange vest

c) We find out someone is taking pictures from space and we want to make sure they can see us.

They did make us easy to find each other when we did a little post-Walk visit to Target.  And we easily spotted some other people that had been at the Walk too. 

9. There are plenty activities for everyone.  This year they did a carnival type thing.  The kids got to play the games as much as they wanted.  Heck, I could have played the games as much as I wanted.  Everyone is encouraged to participate however they want to.

8. All the money raised helps people with Down syndrome.  It funds scholarships for summer enrichment programs, educational seminars, family events, and more. 

 7. When a 20-something woman hops on the horse ride and yells YEEEE-HAAAWW at the top of her lungs in true wild-west style while moving at about .3 miles an hour...everyone thinks it's awesome. That cowgirl was living the moment to the fullest. 

Most of us could learn a lesson from her.

  

6. You could talk about Down syndrome the whole time...or you could not talk about it at all...and both options are completely acceptable and understood.  Our first year, I think we talked about it the whole time.  This year, I don't think it came up in conversation once.

5. When you speak in funky acronyms (AVSD, OT, ST, PT, IFSP, IEP, etc.) everyone knows what you are talking about.

4. No one is too cool, too old, or too self-conscious to have a good time. 

3. It's completely appropriate to hug everyone you meet.

2. The entertainers stay long past their original quitting time, just to make sure no one is disappointed.  

1. In a sea of 300+ individuals whose lives are somehow touched by Down syndrome, we all become "typical".  We bond together, support each other, and we celebrate the blessings that we have been given.

There are still Buddy Walks going on across the country.  To find one happening in your area, search here.

YEEE-HAAAAWWWW!!

Preview.

From BuddyWalk.org:

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

Over the past sixteen years, the Buddy Walk program has grown from 17 walks to nearly 300 expected in 2011 across the country and around the world. Last year alone, 285,000 people participated in a Buddy Walk! They raised more than $11.2 million to benefit local programs and services as well as the national advocacy initiatives that benefit all individuals with Down syndrome.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is an inspirational and educational event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

Speaking correctly.

I'm a bit of a stickler for my children pronouncing words correctly and using proper grammar.  I know this is slightly hypocritical of me; I'm sure my blog posts are riddled with improper punctuation and word choice.  Despite my flaws, I do make an attempt to speak correctly and I expect my children to speak well also.

T-Man is a talker.  He has a huge vocabulary and can make conversation with anyone about any subject.  In fact, sometimes we have to remind him that other people need a turn to talk.  In all of these conversations, his pronunciation is usually flawless...at least it was until last night.

He came home from school with a tooth about to fall out of his head. 

I gave it a little push, and out it came.

Poor kid, definitely going to need braces.

And now words like "police" are being pronounced "pol-isth".  And "rice" is "rye-th". 

Strangely, my language OCD is not bothered by this yet; in fact, I find it adorable.  Although it is pretty hard to take him seriously when he tells us to "Sth-op laughing!" whenever he talks.

Love you, T-Man!!

And while we are speaking about language, in honor of Down Syndrome Awareness Month, I thought you all would like to know how to speak correctly about Down syndrome.  When I first got Miss B's diagnosis, the NDSS website was one of the first places I went for information.  I read and re-read reading all of their "About Down syndrome" pages a gazillion times, trying to soak it all in.  I remember thinking that I had no idea how to speak correctly about Down syndrome, about my baby.  Oy! I had a lot to learn!

I know most of you already say these things correctly;  thank you for being respectful and sensitive and for using the preferred terms and language when you talk about my little lady and all of her Trisomy 21 brothers and sisters.
Here's the "Preferred Language Guide" from the National Down Syndrome Society's website:

Below is the proper use of language for “Down syndrome”:
• Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
 
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
 
• Down syndrome is a condition or a syndrome, not a disease.
 
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
 
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

Half Birthday.

Six months ago today, Miss Banana turned two. 

  

At the time, I still thought of her as my baby--my little one.

But in the past six months, she has decisively grown out of babyhood and is solidly a toddler/preschooler.

Gone are the days of Mommy picking out her clothes.  Gone are the days of being able to keep her from climbing on the table.  Gone are the days of needing me for everything.

Once my girl discovered all the things she could do for herself, she decided she wanted to do them.  She is probably going to be just as stubborn and opinionated as her mother.

As a new parent of a child with Down syndrome, I worried about my child taking a long time to move to the next stage--all the questions about the timeline of the future swirled in my head; trying to stifle the joy to be found in the present...when will she crawl?  when will she walk?  when will she talk?  will she ever be able to do things for herself??

As I've watched Miss Banana grow and develop, I've found myself asking the "when will she ____?" questions a lot less and the "What's the big hurry?" question a lot more.

And I've discovered that there is no hurry.

Whether she reaches the next milestones quickly or stays behind...my little lady never fails to move on--she's constantly working, progressing, growing, becoming all she is meant to be.

While I miss my Miss Banana-baby, there is lots of joy in my little lady as she is now. 

Her future is bright; I'm so thankful that I get to be part of her life.

Miss Banana, I love you to the moon and back.

i have a voice

I know I've posted this before, but since the first time I saw it, it has become my favorite.  I know you will love it too.

Make sure to have the sound turned  on as you watch.

Embark.

em-bark: \im-ˈbärk\    to make a start
I don't know why I ever plan my future because very little of my plans actually work out.  I'm pretty sure that when I was writing my "What I Want to Be When I Grow Up" essay in high school, I never once thought I'd be where I am now.

I'm pretty sure back then I just wanted to own a convertible, live on the beach, and be glamourously famous for something. So far, none of that plan has materialized.  Maybe someday.

Back in Mrs. Watson's 9th grade English class when I was writing those future-plans essays, I remember reading and re-reading a quote from Helen Keller posted on the bulletin board:

Life is either a daring adventure or nothing.

Back then I thought that meant that I needed to:
1) Be a storm chaser or CIA agent
2) Travel the world
3) Go bungee jumping

I'm happy to say that my life full of daring adventures has involved crazy storms, but thankfully no espionage or jumping off of something tall while depending on a large rubberband to save my life. (I would like to have that "travel the world" part though!)

And I'm okay with that.  Because I'm embarking on a new adventure that might not be as heart-pounding, but is just as daring as jumping off that bridge with a bungee cord.

I'm starting a non-profit organization with some other parents here in The Village to support people with Down syndrome and their families.

That might not sound daring and adventurous to you, but to me...I feel like I'm stepping into the air and hoping that I bounce instead of slamming into the ground.  I already made some attempts at this a year ago and ran into brick wall after brick wall...but now it's time to push through and make something happen.  This time, I refuse to give up or be complacent with the way things are now.

I have no idea how long I will be on this adventure.  I have no idea how successful it will be.  I'm simply a mom who sees the need in this area and will do anything to make life better for her daughter and others that also have Ds.

Let the daring adventure begin.

World Down Syndrome Day 2011

Today is 3-21.  In honor of Trisomy 21--three copies of the 21st chromosome, commonly known as Down Syndrome--today the world celebrates World Down Syndrome Day. 

While I usually tend to ramble on about various aspects of T21 on days like these, today, I would like to keep it simple.

(Keep it simple?? Miss Banana is shocked.)

Today, on World Down Syndrome Day 2011:
I am grateful that Miss Banana is in my life.

I am grateful for the new perspective that little extra 21st chromosome brings me.

I am grateful that our lives are fairly mundane and that sometimes I can completely forget about that extra chromosome.

I am grateful to all of my family and friends who love Miss Banana (extra chromosome and all) and stick up for her and try to make the world a better place for her.

I am grateful to all the members of my Down syndrome family that answer my questions, calm my fears, open their hearts and share their lives with me and the rest of the world.

I am grateful to all the people that have stopped using the r-word.

I am grateful to all the doctors, nurses, therapists, and other medical professionals that keep Miss Banana alive and well.

I am grateful for my two little boys who love their sister whole-heartedly and are her biggest cheerleaders.

I am grateful for Dr. C who taught Miss Banana how to sign "I love you".

I am grateful to all the other people out there with designer genes who inspire me, keep me young, and make me want to be a better, happier person.

Happy World Down Syndrome Day to you all!!