Down Syndrome - Maybe In Holland, But Not In Denmark and What Does Bruce Springsteen Have To Do With This?

I had the honor and privilege to give my first public talk about Down syndrome to the Rotary Club of Akron last week.  I called my presentation: "Raising a Child With Designer Genes: Down Syndrome Education, Advocacy and Empowerment".  The Rotary Club of Akron is "dedicated to the health and education of our area's youth and special needs children."   Fortunately for me, this was a wonderful audience who spends a great amount of time helping children with special needs.  In the audience were Todd and his mom (Todd is  29 and has Down syndrome, his own business and oh, just a few Olympic medals for swimming).  Also in the audience was Beckett's dad, Shon (Beckett is Joey's age and has DS). Before I spoke, I also met Dawn who is the mother of four children.  All of her children are adopted and her oldest daughter has Down syndrome and is a "Sparkles" cheerleader in Norton. I hope that I represented those of us in the "21" club to the best of my ability.  

One of the Rotary members came up to me after and said that if had not known Todd since he was practically in utereo that he would not be nearly as informed about Down syndrome as he now is.  That really hit me because that is such a huge compliment that goes both ways.  It's a complement to Todd's family for helping their friends and community understand what it means to have Down syndrome.  It is also a complement to this gentleman who took the time and effort to understand what it means to have Down syndrome or what it means to raise a child who has Down syndrome.  I pray that Cowgirl Up! also provides our friends, family, neighbors and just the world at large with helpful and meaningful information on Down syndrome.  If it does that, then we are meeting our goal.

One of the pieces I included in my presentation is a poem that is almost standard issue to any parent who has a child who has Down syndrome or another type of special need.  It is called "Welcome to Holland" and is by Emily Perl Kingsley.  There are some people in the world of special needs that identify and relate to this poem.  There are some people who hate this poem and defiantly say, "To hell with Holland-- we are still going to Italy."  


"Welcome to Holland" recently came back to my mind when I read that by 2030, if current health policies and trends continue, Denmark could be a country without a single person with Down syndrome.  Yes.  You read that correctly.  In just 18 years, Denmark may be a country in which no children with Down syndrome have been born.  A recent Danish headline read, "Plans to Make Denmark a Down syndrome-free Perfect Society."  Excuse me?  A "Down syndrome-free Perfect Society"?  Really?  It nauseates me to my core.  


While Denmark and Holland (which is actually the Netherlands) are two different places, I find it so ironic that this poem about being welcomed to Holland, Denmark's very close neighbor, is used to help parents while at the same time, Denmark is looking to eradicate people who have Down syndrome.  You know what other country is predicted to be following closely behind Denmark?  France.  Studies show that 96% of parents who have a prenatal diagnosis of Down syndrome in France choose to terminate their baby.    In an article called "'Deselecting' Our Children" by Margaret Somerville, she sums up this attitude, "A societal-level message is: 'We don't want you in our society unless you measure up to a certain standard.  You're only a potential member until you've passed the admission test we'll pay for with our tax dollars.'" 




See what you think about being welcomed to Holland:

WELCOME TO HOLLAND

by Emily Perl Kingsley

©1987 by Emily Perl Kingsley.

All rights reserved

I am often asked to describe
the experience of raising a child with a disability
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.

It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? 
I signed up for Italy! I'm supposed to be in Italy. 
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full ofpestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while
and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go.
That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.

But... if you spend your life
mourning the fact that you didn't get to Italy,
you may never be free to
enjoy the very special, the very lovely things ...
about Holland.

I have a new take on "Welcome to Holland".  I think it is a poem that perhaps not only applies to someone who has a gravely ill child or a child with special needs, but it is also a poem that could apply to so much more. This could apply to a career choice. You thought being a lawyer was going to be glamorous and exciting, but it's mostly blinding paperwork and billable hours? Welcome to Holland.  This could apply to an unhappy marriage.  You wanted roses and romance and ended up with a mortgage, car payment and expensive groceries.  Welcome to Holland. 


This is not how I feel about being a lawyer or about marriage for that matter, but I'm trying to illustrate that there are many twists and turns in our lives that are unexpected.  Part of growing up is realizing that some of the things we had "planned" don't turn out how we thought they would and instead of spending the rest of our lives grieving over that disappointment, we need to embrace the life we have.


I think the part of "Welcome to Holland" that I have a hard time with is the line that says, "And the pain of that will never, ever, ever, ever go away..."  That's the line that kind of deflates me.  That is just not a Cowgirl Up! sort of approach to this unexpected, but incredible journey.

This is where Bruce Springsteen comes into play.  I know-- you were wondering how he was going to be tied into Denmark and Holland and special needs.  Here is how.  My husband is a HUGE, HUGE, HUGE Springsteen fan, which by default, makes me a loyal follower as well.  Over the years we have seen Springsteen in New Jersey, D.C., Cleveland, and Detroit.  This month we are going to FOUR concerts.  My husband has a few hobbies that he is passionate about and they include movies, Sprinsteen and Cadillacs.  Far ahead of his hobbies are his sons and his wife, but he is truly passionate about his hobbies and by default, that means that I am as well.

Detroit was our first "Wrecking Ball" concert and there is just something about a live concert that is like a religious experience to me.  Do you feel that way?  There is just nothing like an amazing live performance.  Where the bass is so loud and deep that you can literally feel it in your lungs.  


A Springsteen concert is like a revival.  Thousands of people praising together.  Dancing.  Celebrating.  And this is where I found my new version of "Welcome to Holland".  I literally stood at the concert last week and thought about Holland and what Joey having Down syndrome means for our lives.  This is where I found a song that hits me deep and takes away the pain of knowing that in some countries, people like my child are not wanted and are sought to be eradicated.  This song gives me hope.  When I think my own little city is in ruins, I am going to choose to rise up.  


After all, isn't hope the one feeling that can help overcome grief?  Come on, rise up!

My City of Ruins

There's a blood red circle

On the cold dark ground

And the rain is falling down

The church door's thrown open

I can hear the organ's song

But the congregation's gone

My city of ruins

My city of ruins

Now the sweet bells of mercy

Drift through the evening trees

Young men on the corner

Like scattered leaves

The boarded up windows

The empty streets

While my brother's down on his knees

My city of ruins

My city of ruins

Come on rise up! Come on rise up!

Come on rise up! Come on rise up!

Come on rise up! Come on rise up!

Come on rise up! Come on rise up!

Now there's tears on the pillow

Darlin' where we slept

And you took my heart when you left

Without your sweet kiss

My soul is lost, my friend

Tell me how do I begin again?

My city's in ruins

My city's in ruins

Now with these hands

With these hands

With these hands

With these hands

I pray Lord

With these hands

With these hands

I pray for the strength, Lord

With these hands

With these hands

I pray for the faith, Lord

With these hands

With these hands

I pray for your love, Lord

With these hands

With these hands

I pray for the strength, Lord

With these hands

With these hands

I pray for your love, Lord

With these hands

With these hands

I pray for the faith, Lord

With these hands

With these hands

I pray for the strength, Lord

Come on, rise up!

Come on, rise up!

10 Words Moms Shouldn't Say - Check Out #3!

This is a cross-post from The R-Word Reporter.  Happy Thursday!

My sister forwarded me an article from Circle of Moms.  The article is called 10 Words to Avoid in Front of Your Kids.  She followed up with a phone call and was so excited to find out whether or not I had read the article.  Thanks for sharing this, Lu!  I think this article is wonderful and I'm committed to helping spread the word.  Check out number 3!!!


Huge kudos to Circle of Moms for this wonderful reminder and especially for including the R-word in this list.  What is so interesting to me is the number of words on this list that we were forbidden from using when we were kids.  I'm grateful my parents taught us that words have power.  What words were you not supposed to use when you were a kid?



Here is what Joey thought of this wonderful article (with one of his favorite men- Richard K.):

10 Words to Avoid in Front of Your Kids

Out of the mouths of babes . . . As parents, we know that anything that's uttered within earshot of our kids is fair game for repetition. And while eliminating all of those four-letter favorites is a no-brainer, there are plenty of others that can be just as damaging. Here, the 10 words we suggest that you ban from your vocabulary in front of your kids.

1. Hate: You might be talking about rush hour traffic, a line at the grocery store, or a bad commercial on TV. But when it's used to talk about a classmate, teacher, or birthday gift, "hate" can be terribly hurtful.

2. Stupid: There's not much that's less appreciated than being called "stupid," and this is one that lil ones tend to enjoy repeating . . . again and again and again.

3. Retard: A word that's so offensive, there's an entire website devoted to banishing it. If you haven't already done so, you should get on board and eliminate the R-word from your adult vocabulary as well.

4. Gay: Unless your child is old enough to have a conversation about homosexuality, chances are, the word "gay" is going to be misused in a potentially hurtful (not to mention, incorrect) manner.

5. Loser: With bullying at the forefront of most parents' minds, putting down someone's self-esteem is something that you, and your kids, should never be a part of.

6. Dumb: See above.

7. No: We know you're not actually going to eliminate the word "no" from your repertoire. But try to limit its frequency. It seems to roll off the tips of toddlers' tongues way too easily.

8. Shut up: Make this a forbidden phrase now to avoid its overuse later. Tweens tend to enjoy overusing it at times when it doesn't even really make sense (think: "He asked her out?! Shut up!").

9. God (as in "Oh my God!"): If religion is present in your home, the word "God" will be, too. However, try not to use it as an exclamation of excitement or surprise. Even if "Oh my God!" doesn't bother you personally, you never know when it will come off offensive to someone else.

10. Bad: Like "no," it's one that's inevitably going to come up, but shouldn't be used excessively. Being told that you're "bad" repeatedly can be totally demoralizing for a child (or anyone, for that matter).

A Prenatal Diagnosis of Down Syndrome - What Does It Mean?

I just read this article today and the title of it is:  Why So Many Babies Are Still Being Born With Down Syndrome.  It is by Adam Wolfberg and was on The Atlantic website yesterday. At first I was hesitant about reading it.  As we get further along down the road of having a son with Down syndrome, I am finally realizing that although I want to read every possible thing out there, that maybe there are times when it is better if I don't.  I say this because sometimes there are articles that so mis-characterize Down syndrome that the article ends up being more painful rather than informative.  Then I read the sub-title, "As prenatal tests improve, more and more women are finding out if their fetus has an extra chromosome, but they're still carrying to term."  Hmmmm... interesting.  I had to read more.


Having found out through a chorionic villus sampling at 13 weeks pregnant that Joey had Down syndrome, I have been through the stress and the worry.  I have been presented the "options" women are given.  I have spent countless nights up praying and asking God whether or not I would be strong enough to raise a child who had Down syndrome.  I am eternally grateful that the answers to my prayers was that, yes, I am strong enough to raise Joey.  That is the crazy part.  Had I known Joey before he was born, the diagnosis of Down syndrome would have honestly never have mattered.  I find that it was really a fear of the unknown.  And, yet, no one could have prepared me for the magic in our lives known as Joey.  

The hopping dino has been an amazing toy in helping Joey learn how to release objects.

According to the article below, the abortion rate of babies with Down syndrome is declining, despite the fact that the prenatal testing for it is getting easier and less invasive.  I had to read that sentence a few times before it sunk in.  For parents of children with an extra chromosome, we advocate and try to educate the world on the beauty and wonder in having an extra chromosome.  We try to share stories and help people understand our battle cry that people who have Down syndrome are truly more alike than different.  We seek acceptance, understanding and equal opportunities.  Could it be that the world is starting to accept people with Down syndrome more?  Could it be that mothers-to-be are realizing that having a child with an extra chromosome is not the worst thing that could happen to them or their family?  I pray and hope that this is exactly what is happening.  One of my favorite exceprts from the article is:


Perhaps the most important factor is a sea change in society's approach to individuals with Down syndrome. Explains lead author of the recent paper, Jaime L. Natoli, a senior consultant in the department of clinical analysis at the Southern California Permanente Medical Group, in response to emailed questions: "Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers -- perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street."


What will the impact of these new tests be on the number of babies born with Down syndrome, since it is now easier to make a diagnosis without risking miscarriage? Says Natoli, "I cannot predict if the termination rate will go up, down, or stay the same. A lot of people think it will go up, but I wouldn't be surprised at all if it went down."

I hope you enjoy the article.  My hope for a world that accepts, loves and understands people who have Down syndrome springs eternal.

Why So Many Babies Are Still Being Born With Down Syndrome

APR 2 2012, 12:06 PM ET 1

As prenatal tests improve, more and more women are finding out if their fetus has an extra chromosome, but they're still carrying to term.

Shutterstock

Prenatal diagnosis -- the ability to diagnose abnormalities before a baby is born -- is undergoing a revolution due to the recent arrival of tests that can accurately detect fetal genetic abnormalities, including Down syndrome, by testing the mother's blood. For the past 30 years, obstetricians like me have used the mother's age, ultrasound markers, and levels of certain blood chemicals to guess whether a fetus might have Down syndrome, or other genetic abnormalities. But it took an invasive test -- an amniocentesis or a chorionic villus sampling -- to be certain, and these tests occasionally caused miscarriage. It was an inexact guessing game that was extremely difficult to explain to patients.
There are a host of reasons why patients and doctors want to know in advance whether a child will be affected by a large number of genetic diseases, but by far the most common concern patients have is whether their baby will have Down syndrome -- a condition in which the child has an extra copy of chromosome 21 and will have cognitive impairment and be at risk for other abnormalities, from heart defects to leukemia to early dementia.

The number of babies born every year affected with Down syndrome has increased slightly in the United States to about 6,000 annually.

But there are really only two reasons why parents undergo testing to determine whether their baby will have Down syndrome: to prepare to raise a child with special needs, or to terminate the pregnancy. (Those of you who hold strong 'pro-choice' or 'pro-life' views are getting your hackles up, I know. So I'm going to go ahead and apologize in advance for ignoring your agendas entirely in this post.)

The number of babies born in the United States each year affected with Down syndrome is the result of several factors, including the number of fetuses conceived that carry the third copy of chromosome 21 (older mothers are more likely to conceive Down syndrome-affected fetuses, and the childbearing population in the United States is aging), the percentage of pregnant mothers who choose to test for Down syndrome, and the percentage of women who learn they are carrying a fetus affected with Down syndrome who choose to terminate. Fetuses affected with Down syndrome are more likely to miscarry than normal fetuses, but this hasn't changed over time.

Interestingly, the number of babies born every year affected with Down syndrome has increased slightly in the United States to about 6,000 annually according to the Centers for Disease Control (CDC), even as the trends I just mentioned have swung dramatically.

A recent article in Prenatal Diagnosis provides the best glimpse into the choices women made about abortion for Down syndrome over the past couple of decades, and the authors' conclusions are that fewer women who learn their fetus has Down syndrome are opting to terminate their pregnancy, and the percentage has probably declined over time to someplace between 60 and 90 percent. The conventional wisdom, based on a paper in the same journal from 1999, was that over 90 percent of Down syndrome-affected pregnancies were terminated, although the current paper casts doubt that the percentage was ever that high.

So what's going on? If the abortion rate is declining, why isn't the number of babies born with Down syndrome rapidly increasing? Several factors are at play:

• The number of babies born to Hispanic women is increasing, and Hispanic women are least likely to terminate a fetus affected with Down syndrome.
• It used to be that women had to make a conscious decision to have the test for Down syndrome, and the women who chose to be tested were probably more likely to terminate if the series of tests was positive. Due to guidance from the American College of Obstetricians and Gynecologists, more and more women are getting tested for Down syndrome, perhaps including more women who don't terminate their pregnancy when the test comes back positive.
• However, since women who don't get the Down syndrome tests can't terminate for this reason (because they never find out their fetus is affected), and more women are being tested, the overall number of terminations for Down syndrome may have increased.

Perhaps the most important factor is a sea change in society's approach to individuals with Down syndrome. Explains lead author of the recent paper, Jaime L. Natoli, a senior consultant in the department of clinical analysis at the Southern California Permanente Medical Group, in response to emailed questions: "Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers -- perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street."

What will the impact of these new tests be on the number of babies born with Down syndrome, since it is now easier to make a diagnosis without risking miscarriage? Says Natoli, "I cannot predict if the termination rate will go up, down, or stay the same. A lot of people think it will go up, but I wouldn't be surprised at all if it went down."

My guess is that new tests will have little impact. They are much easier to understand than the old ones, and eventually insurance companies will pay for them for most women. I suspect that in 10 years most women carrying a fetus affected with Down syndrome will receive a diagnosis early in their pregnancy. This will mean that more women will have to make the gut-wrenching decision about whether to continue the pregnancy or abort. And I predict that the number of babies born affected with Down syndrome will stay about the same.