Joy comes in the morning: A response to the CBS report on Down syndrome in Iceland

A recent CBS news report on the near eradication of Down syndrome in Iceland has caused quite a stir in the Down syndrome community, for good reason. (Please, please, if you haven’t yet, watch the full segment before reading this or any other commentary.) I have thought about this story a lot over the past couple days.

First, I’d like to address the unfortunate backlash against CBS. Within hours of the story’s initial airing, several political figures posted sensationalized commentary accusing CBS of “celebrating” Iceland’s near-elimination of Down syndrome. I understand that mistrust of mainstream news media is at an all-time high, but it needs to be said: The CBS report did exactly what journalism is supposed to do, which is examine an important and complex issue as objectively as possible. CBS allowed people of various perspectives to present their views and experiences without judgement. Certainly, there is more I wish could have been said about the issue, but CBS did not take sides in its coverage. While we can all think of many examples of journalistic failures, I don’t believe this is one of them.

So, let’s agree to set aside the misplaced outrage. This piece was an important examination of a trend that has been growing across Europe. In Iceland, the rate of termination for pregnancies that test positive for Down syndrome is 100 percent; in many other European nations, it is nearly as high. This is information we need to know, and it needs to be the starting point for some soul searching and difficult conversation here in the U.S. Let’s focus on the actual issue at stake, which is: how do we as a society view and value people with Down syndrome?

This is a hard conversation for people in the Down syndrome community, because it is so intensely personal. When we hear that 100 percent of people in Iceland choose not to IMG_9770give birth to babies with Down syndrome, we hear them telling us that our children are not worthy of life. How can any parent not react to that? Of course it makes us angry and terribly sad. We feel the tremendous loss of the lives those children could have lived and the contributions they could have made to their families and country.

My mind also went to the two or three children who are born with Down syndrome each year in Iceland due to missed prenatal diagnoses, and what it must be like for them and their families. They will navigate their experiences without the support of a local network of other families like theirs. If Down syndrome has mostly disappeared, what type of public services will be available to support these kids’ development and independence as they grow? Who will pressure schools and other public and private organizations to make sure kids with Down syndrome are fully included with their peers?

The situation becomes self-perpetuating. With so few children with Down syndrome growing up in Iceland (and across Europe), the lack of visibility will foster further ignorance and fear. The few children who are born with Down syndrome will face shrinking opportunities. All of this makes it even harder for families to choose differently when presented with a prenatal diagnosis.

This is relevant to those of us in the U.S. because we have to grapple in our own society with the values we hold. Do we believe the lives of people with Down syndrome are worthwhile? Do we believe people with Down syndrome contribute to our society and are worthy of the medical care and supports they need? Do we believe in the innate value and dignity of every person, or do we believe that value is tied to ability and achievement?

I have always wondered what would happen if parents expecting typically developing children were faced with a scenario like the one parents of children with prenatal diagnoses face. What if early in their pregnancies, all families were met by a solemn-faced doctor informing them of all the risks and hardships their child could face and all the ways the parents’ lives would become more difficult? We often act as if the lack of a diagnosis is a guarantee of a “normal” life. The truth is far more complicated.

Most typical newborns are wrapped in an invisible cloak of infinite possibility. Parents dream of the wide-open potential futures for their tiny child. As time progresses, those possibilities by necessity narrow. There is loss along the way. We make choices for our children, and as they grow, they make choices for themselves. Circumstances shape reality. Messy uncertainty and complication is a fundamental part of the human experience. When we begin our path as parents, we take on the near certainty of heartache along the way. We do our best to protect, guide and shape our children and then hope and trust they will come out right in the end. We pray they find purpose and happiness. Through it all, love makes the times of pain more than worthwhile.

For parents of a child with Down syndrome, their precious newborn is missing the invisible cloak. At the moment of diagnosis, infinite possibilities suddenly contract. Those wide-open dreams, rather than narrowing gradually with time, are shattered in a B&Wmoment. The loss is sudden and jarring. There is a grieving process. But the beauty of that experience is that as those parents hold their new child and watch that baby grow and learn and become, love heals the grief. Often, dreams we thought were broken are rebuilt. They may look different in their new form, but they are beautiful in their own right. New possibilities open, and new paths present themselves. And in the process, we find that while there will always be heartache in this process, there are other griefs we are spared. And always, always, love makes the times of pain more than worthwhile.

This is what I wish I could tell every frightened mother sitting in an office across from a solemn doctor, barely hearing the words “Down syndrome.” I want to tell her, “There will always be heartache in parenting. There are risks and hardships with every child. Your heartache comes now, but joy comes in the morning, if you let it. Love will make the times of pain more than worthwhile.”

This is the message I know so many organizations are attempting to spread. There are global groups working worldwide to educate medical providers, genetic counselors and families and to help them have a more balanced understanding of Down syndrome and what it means for families. U.S organizations are doing similar work here at home. There are no regulations in the U.S. around prenatal testing and the information given to parents. Many providers are operating on woefully outdated and inaccurate information. Here are a few facts from the Global Down Syndrome Foundation that I found interesting:

  • The most current statistics suggest that in the U.S., 67 percent of pregnant women who receive a Down syndrome diagnosis through amniocentesis choose to terminate. However, more than 95 percent of pregnant women do not choose to have an amniocentesis.
  • Studies show that most families of children with Down syndrome are stable and happy, and siblings often demonstrate increased levels of empathy and compassion. One major study showed that the divorce rate for parents of children with Down syndrome is lower than the national average.
  • I’ve mentioned this before, but it bears repeating that the average life span of a person with Down syndrome today is nearly 60 years. (Compare that to 28 in the 1980s.)
  • The vast majority of children with Down syndrome grow up with their families at home and are included in their local public schools. Most graduate from high school, and increasing numbers are pursing college or vocational training.
  • A study referenced by the National Down Syndrome Congress found that older children, teens and adults with Down syndrome report leading happy and fulfilling lives.¹

So, what does all this mean? It means that I will continue to share our family’s story with the world, because the world needs to see people rather than an abstract diagnosis. It means that our family will continue to help raise funds for organizations that are doing the vital work of changing public perceptions of Down syndrome and educating providers so that families grappling with a diagnosis have accurate and balanced information.²

It also means that I expect politicians who score political points by condemning the Iceland story to back that up with policies that increase opportunities for people with Down syndrome here in the U.S. That means fully funding critical Medicaid programs and supporting and fully funding inclusive education. It means increasing access to postsecondary education and broadening employment options for people with intellectual disabilities. It means fostering an environment of respect, where every person is valued.

In the meantime, I plead for compassion. Families struggling with the decision of how to cope with a prenatal diagnosis are not setting out to establish a national eugenics program. Most are frightened and vulnerable, under pressure to make a decision quickly with limited information. Many of them truly are considering the best interests of their child as best they can. Compassion and slowness to judgement are not only best, they are required for those of us who follow Christ.

The response in the Down syndrome community to the Iceland story has emphasized an important truth: people who know, know how important the contributions of people with Down syndrome are to our families and the world. Help us celebrate Down syndrome, and you are helping us make the world a better place.

¹Skotko, B.G., Levine, S.P., & Goldstein, R. (2011). Self-perception from people with Down syndrome. American Journal of Medical Genetics. Part A, 0(10), 2360-2369. http://doi.org/10.1002/ajmg.a.34235

²If you are interested in joining us in supporting organizations working to make the world a more welcoming place for people with Down syndrome, here are some links:

Global Down Syndrome Foundation (Their statement on the Iceland story is worth a read.)

National Down Syndrome Society

National Down Syndrome Congress (Another excellent response to the Iceland story)

Down Syndrome Association of Middle Tennessee (our fantastic local organization)

GiGi’s Playhouse Nashville (our local Down syndrome achievement center)

GiGi’s Playhouse, Inc. (global headquarters for Down syndrome achievement centers)

Down syndrome’s biggest gift

It’s completely outrageous, but somehow, the school year is over. Today was Lina’s last day, and a half day tomorrow is Corin’s wrap-up. My oldest is only finishing first grade, and already I can tell you, every year seems to go faster than the one before. I am not prepared for what this means for the future.

As Lina’s end-of-year party wrapped up and we headed home, I found myself again reflecting on the remarkable people she has brought into our lives. I’d like you to meet a few of them.

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That’s Ms. Meri. This was Lina’s second year in her early childhood preschool class. Ms. Meri has a graduate degree in early childhood special education from Vanderbilt, and she is certified in behavioral analysis. I’m not sure I can really convey the remarkable work she does and the tremendous difference she has made for Lina and our family. Her blend of warmth and no-nonsense high expectations was exactly what Lina needed as she began her school experience. Ms. Meri’s professionalism and expertise have been clearly demonstrated at every turn over the past two years.

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That’s Ms. Courtney. She was Lina’s occupational therapist this year. As the year began, Lina was resistant to fine motor activities like cutting with scissors or working on pre-writing skills. This morning, Courtney told me that writing her name on the chalk board is now one of Lina’s most preferred activities. That is no accident. So much patience and persistence has gone into finding the right strategies to motivate our girl to practice the fine motor skills so essential to her future academic success. Ms. Courtney also happens to volunteer as a leader for the GiGi’s Playhouse EPIC program for young adults, so she is doing big things in our Down syndrome community.

I didn’t get pictures with several other key members of Lina’s educational team: Arianna and Elizabeth, the fantastic full-time aids who did so much of the work necessary for the kids to learn and navigate the school day; Jodie, Lina’s beloved speech therapist, who often got a full-body, wrap-around legs hug at drop-off in the mornings; and Amy, the lovely and patient physical therapist, who made sure the physical environment in the classroom was suited to Lina’s needs and worked with her on the gross motor skills needed to safely navigate the school environment.

No one could have prepared me for how important these people have been to us. They work together as a team, helping to lay the foundation for Lina’s future success and thereby lifting so much of the weight that settled on my shoulders with her diagnosis. But beyond what they do for Lina, they are beautiful people, and my life is richer for knowing them.

What I am really trying to say is that besides the blessings of her individual presence in our family, Lina has brought us the gift of a network of truly remarkable people. In fact, that network extends well beyond her school. The early intervention therapists and staff who were our introduction to special education in Lina’s infant years, GiGi’s Playhouse volunteers and families, the lovely people we’ve met through the Down Syndrome Association of Middle Tennessee, random strangers who have shared their personal connections to Down syndrome… I regularly find myself counting as blessings people I have met in our foray along this unexpected path.

There are also good-byes that come with the package. Next year is Lina’s last in preschool, and it will bring changes. She will switch to the afternoon schedule, and after two years in Ms. Meri’s classroom, she will be required to change teachers. It’s always a little sad for a kid to say good-bye to a beloved teacher, but it’s especially poignant after two years of working with Ms. Meri and developing a solid trust in her ability to provide exactly what Lina needs in the classroom. We will miss her greatly.

There have been good-byes before, including to Lina’s entire team of therapists when early intervention ended at age three. Because these relationships are by nature more involved than in the average educational setting, the good-byes are hard. That will undoubtedly continue to be true. But it will also continue to be true that our lives are so much better for the role these remarkable people have played in Lina’s life.

It turns out, the biggest gift of Down syndrome is something we all hope for: meaningful connections with the very best kind of people.

I don’t want to let this post go without noting that our educational experience is unfortunately not the norm. We’re still early in our experience, and I am sure we will face challenges in the future. But in many school systems across the nation, families struggle to get even the most basic educational and support services for their children with special needs. Under funded and under resourced schools often see those needs as a burden and try to get away with as little as possible, requiring parents to gird themselves for constant battle and strain family budgets and schedules to fill the gaps with outside resources. Even school systems with good intentions often fall short due to a severe lack of resources and training and the push and pull of constantly changing regulations and competing priorities. I am incredibly grateful that our experience thus far has been exceptional, but I also hurt for families whose educational experience has added to rather than subtracted from their burden. Better is clearly possible, and it shouldn’t take a wealthy county to make that happen. We must do right by our public schools, where most children with special needs have to receive their education and therapy services. 

What’s in a word?

March is a big month in the Down syndrome community. March 21 – 3.21, for three copies of the 21st chromosome – is World Down Syndrome Awareness Day, and there are usually several events leading up to that day. Today, for example, is dedicated to Spread the Word to End the Word, a campaign focused on helping people eliminate the word “retarded” from their vocabularies.

I haven’t posted a lot about this particular issue, because my feelings on this are a little complicated. Don’t get me wrong, it’s jarring when I hear people use the word “retarded” as a pejorative. I know the imagery it evokes, and it’s not flattering to people like Lina, who until pretty recently bore the term as a medical label. (It wasn’t until Obama signed Rosa’s Law in 2010 that “mental retardation” and “mentally retarded” were removed from government policy language.) The r-word as an insult draws a parallel between a type of person and something stupid and contemptible.  The words we use do affect how we think about and treat others. I don’t buy the idea that considering the feelings of others is too much of a “political correctness” burden to bear.

On the other hand, I get it. We are dealing here with language creep. There is a long history of words that refer to people with disabilities becoming general insults. We don’t kick up the same kind of fuss today about the words “idiot” or “moron” (though I would certainly discourage my kids from using them out of general kindness). At its most literal, “retarded” means “slowed down.” In that sense, it is an apt explanation of what happens for people with an intellectual disability, who generally take a little extra time to learn and process.

lina-eyesI have found it very helpful to operate based on people’s best intentions. I get that when it comes to any sensitive issue, many of us – myself included  – don’t always know what to say. The last thing I want is to make people so fearful of saying the wrong thing that they are unwilling to engage at all. Open dialogue is the only way to address the bigger issues at stake. I want friends and acquaintances – or strangers in the grocery store, for that matter – to feel free to ask questions in good faith. I want you, dear reader, to know that it’s okay not to know. The only real crime here is being unwilling to learn.

Which, I suppose, brings us full circle. While I understand that many, many people use the r-word without meaning any offense, its connotation can be very hurtful to a lot of people. So here’s the deal: I promise not to crucify you for unintentional offenses. I get that there are things you don’t know about people with Down syndrome. It’s okay. But I will urge you to learn. Be willing to ask questions, to get to really know people with disabilities, or, if that’s more than you can do, to at least read up.

Words matter because they refer to deeper things: to how we as a society view and categorize people. What are our deep-seated assumptions about a person with an intellectual disability, the ones we would never say out loud and may not even realize we hold? Do you really understand that every person with a disability is a unique individual who is loved and valued as a family member, school mate, coworker, friend and neighbor? Or are you unintentionally reducing people with intellectual disabilities to a caricature that makes them “other” and minimizes their humanity and value? Once we all have a handle on those issues, I have a feeling the words we use will naturally change to reflect our respect and understanding.

A ball for believers

If you follow my social media feeds, you’re probably already sick of seeing my pictures from last night’s GiGi’s Playhouse Believer’s Ball. I apologize if I seem overly exuberant. It’s been a long while since Jon and I have gotten really dressed up to go anywhere, and this was for a cause very near our hearts.

img_0442I’ve had a nasty sinus infection for more than a week, but I finally got antibiotics on Friday
and rested up as much as I could yesterday. I was determined to make this event.

If you’re not familiar with GiGi’s Playhouse, let me introduce you. GiGi’s is a network of
Down syndrome achievement centers. (I think the current count is around 30, including one in Mexico, with more opening all the time.) These are physical locations where people of all ages with Down syndrome and their families can gather for free therapeutic and skills training programs, socialization, one-on-one reading, math and handwriting tutoring and play in a fun and welcoming environment. Our Nashville GiGi’s is located in Brentwood, south of the city. As I’ve mentioned on this blog, I lead the Busy Bodies (previously 2 & Under) group for the littlest ones and their families. Lina has at different points participated in that group and a music and language img_0446class, and she and Corin now go every week to a Special Olympics Young Athletes event that focuses on beginning athletic skills. They LOVE that class. Most GiGi’s programs are led by therapists and experts in the areas they teach. Ninety-some percent of the people who work at our Nashville GiGi’s are unpaid volunteers.

When I talk to people about why GiGi’s is important to us, I go back to when Lina was a newborn and we were first trying to get our bearings. We had been introduced to the Down Syndrome Association, which offers fantastic resources for families. I was a little lost, though, on where to go to meet other families like ours. I wanted to connect in person with parents who had been where we were, but a support group felt too intense. Then I learned about a new place called GiGi’s Playhouse. At the time, we lived too far away to access GiGi’s as often as I wanted, but once we moved closer, it became a staple of our family’s social support system. As I’ve become involved as a volunteer, I have seen other families find in GiGi’s exactly what I was needing so badly when Lina was born: a place to connect, ask questions and find encouragement and support from people who just get it.

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Our girl on a centerpiece vase

In addition, GiGi’s is a big piece of Mission: Lina’s Future. It’s the answer to questions like, “What do we do to support Lina’s progress over the summer, when she’s not in school?” The answer: Sign her up for one-on-one tutoring and therapeutic programs at GiGi’s. “How do we make sure she and Corin have social support from people who understand their specific experiences?” The answer: Build a network of GiGi’s friends. “How do we support Lina’s independence as she grows?” The answer (or one piece of it – obviously this is part of a much broader plan): Get her involved in job training and social and therapeutic programs for older kids and young adults at GiGi’s.

img_0455GiGi’s works hard to build business and personal relationships in the community to educate and open doors for people with Down syndrome. These partnerships have allowed young adults with Down syndrome to learn floral arranging, become active members of a local CrossFit gym and find jobs at restaurants, businesses and even the Tennessee Titans. There is so much more I could tell you, but I think you get the picture: GiGi’s Playhouse is awesome.

The Believer’s Ball was a fun night out for a couple of parents who needed it. But it was also the biggest source of funding for the year for a place that makes life tangibly better for Lina and our family. So thank you to the many people who worked incredibly hard to organize the gala, to the many businesses and individuals who sponsored the gala and donated auction items, and to everyone who came out, bid in the auction and made generous donations. I hope you know how much it matters to a lot of families like ours.

The sibling question

One of the things I worried about immediately after Lina’s birth was the impact her diagnosis would have on Corin. He didn’t have a say in this; how would his life be different as the result of having a sister with Down syndrome? Would he feel shortchanged because of the extra attention and effort that would go into meeting her needs? Would he be embarrassed by her or resent her for making our family different? How would we explain Down syndrome to him, and would he understand? On the flip side, I felt instinctively that the net result would be a son who had a greater level of empathy and a strong connection with his sister. (As it turns out, research backs up that belief.)

I’m pretty sure these worries and hopes are common to most parents who have been or will be in our shoesIMG_8591. (In fact, research suggests concern for siblings is a big factor for women who choose to abort after receiving a prenatal Down syndrome diagnosis. See the above link.) I’ve been thinking about this subject today after replying to a question in an online forum about how to talk to siblings about Down syndrome.

Corin was 2 1/2 when Lina was born – much too young to understand that there was anything different about her arrival or her person. Lina was his baby sister, and he intermittently embraced or ignored her, as any toddler does with a new sibling. He proudly pushed her stroller and talked to strangers about her, and we encouraged their sibling bond in all the ways parents do.

I don’t know exactly when our first real conversation about Down syndrome happened, but I’m pretty sure it came up naturally as a result of a doctor or therapy visit. Corin was around three, and I talked to him about how no two people are exactly alike. “We’re all different in our own ways,” I told him. “Some kids are really fast runners. Some kids have a hard time reading but are really good at math. Some kids have red hair or brown hair, some kids have blond hair or black hair. Some kids need glasses to see well or maybe have trouble walking and need a wheelchair to get around. Some kids have something called Down syndrome. That’s what Lina has.” I told him Down syndrome meant13900190_10155098221844745_5088795064837644994_n that it might take Lina a little longer to learn some things, like how to walk and talk, and that she might have to work extra hard at things that would be easier for some other kids. But, I told him, she will learn and do pretty much everything you do, and very often, she will learn by watching you.

From then on, Down syndrome was part of an open and ongoing conversation. It’s unlikely Corin will remember one big talk. Instead, Down syndrome is just something he’s grown up with. It’s one part of who his sister is, and one small part of our family’s story. As he’s gotten older, we’ve talked a little about the basics of genetics and how Down syndrome happens. He has occasionally asked more detailed questions, and sometimes, we’ve had to clear up confusion. (For example, he seemed at one point to think there was a connection between Down syndrome and embryo donation. We had to make sure he understood that Lina came to our family as an embryo from a donor family, but that’s not why she has Down syndrome.) We haven’t always had the perfect answers or known exactly what to say, but we’ve worked through it together.

Now, at six years old, Corin notices people in public who have Down syndrome or another type of disability. It offers a lot of great opportunities to have conversations like, “Yeah, isn’t it awesome that that guy has a wheelchair to help him get around? I bet he likes to go fast!” or “Yes, I saw that girl using sign language. She may be deaf. Isn’t it cool there is a language for people who can’t hear?” Our conversations about Down syndrome have become part of a larger environment in which our family celebrates differences of all kinds. Discussions about disability, race, gender, politics and religious differences form an arc, a family theme of appreciating all kinds of people and understanding that we are all beloved children of God with our own special roles to play.

There are still a lot of years ahead of us and probably a lot more questions to answer and challenging situations to navigate. Have there been times when shuttling back and forth to therapy appointments has been wearisome for Corin? Sure, that’s happened. There have been times when he has acted out in a ploy for attention from therapists or doctors who were focused on Lina. But I strongly suspect that when he is old enough to look back, he will say hIMG_7474e thought nothing of those things, because it was simply how things were. This is our normal, and Corin loves his sister dearly.

In the end, I am incredibly thankful Corin has a life experience that makes lessons of acceptance and understanding so real. As a kid, I knew my dad was unusual to other people because he was blind. It was amazing to them that he could cook and read us stories and do so many of the things any dad does. To us, braille stories and reading pancake recipes out loud to dad on a Sunday morning were normal. Our family adapted and thrived. I learned that what seems strange or unfamiliar to me may be normal and even wonderful to someone else. I learned that what appears to others to be a disadvantage can in fact be a strength. I learned that people are people underneath all our differences. Now, Corin will live those same lessons through his grandpa and his sister.

What parent wouldn’t want that for their child?

Year one of preschool – check!

Today was Lina’s last day of preschool for the summer. I have been surprisingly emotional about this. She has come such a long way since she started in September, and I have so much love and gratitude for her teacher, aides and therapists who have helped that happen. It’s also one more of the endless reminders of how quickly time is passing.

We had Lina’s IEP meeting last week to set goals for next year, and I came away so encouraged. The people who gathered in that room love Lina dearly, and the IEP goals they drafted tell us they have the same high expectations for her that we do. When I said it was my personal goal to have Lina reading before she starts kindergarten, heads nodded all around the table. I know she can do it, and even better, so do they. Lina has a team of six consummate professionals – her teacher, two aides, and speech, occupational and physical therapists – all working together to make sure she is able to reach her full potential. Her school is in a county that believes and invests in high-quality, inclusive education for all students. No school system is perfect, and I know IEP meetings will get harder as Lina enters the more challenging general education setting in elementary school. They’ll probably get harder again with each new stage of her education. But I am so thankful that she is getting this start, with these people at her side.

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Party snacks!

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Her beloved speech therapist, Ms. Jody

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Our favorite preschool teacher, the fabulous Ms. Meri