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)

Last year of pre-K

And here they are, Lina’s first day of school pictures. She was so excited.

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Heading to the front steps to wait for the bus

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She admittedly looks much fresher in these than she did when the bus finally showed up 25 minutes late. (No pictures of her getting on, thanks to the rush.) She goes in the afternoons this year, and she’s riding the bus to school for the first time. (I’ll be picking her up to spare her the much longer ride home.) She has a new teacher, aids and therapists. It’s a year of changes, but hopefully it will be good preparation for the much bigger ones to come when our girl heads to kindergarten next year. Truthfully, it’s entirely possible I’m the one who most needs to get used to the changes. After two years with a wonderful preschool teacher, I’ve had my worries about having to switch. But then I caught this moment with her new teacher at yesterday’s meet and greet:

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These preschool teachers, y’all. They aren’t in this for the money or the easy days, I can tell you. There is no mistaking the love on her teacher’s face; Lina is in good hands again this year.

Off to 2nd grade

It’s that time of year again, which comes remarkably early here in the south. The kiddos are headed back to school, with freshly sharpened pencils, unbroken crayons, shiny new lunch boxes and mildew-free water bottles. Corin is beginning second grade, where he has his own desk for the first time. (He sat at group tables the past two years). He was super excited, and while we definitely saw touches of the old anxiety over the past few weeks, he was much more confident walking into his classroom this year.

Every year, we take time to remind Corin that while we want him to do his best in school, the thing that matters most is his ability to show love and kindness to the people around him. “Look for the lonely kids,” his dad and I say. “Stick up for the kids your other friends think are weird. Be a friend to the kids who get left out. We know you’ll be able to do that, because you have Jesus’ love in your heart.”

A fellow mom in our Down syndrome community posts a quote at the beginning of every school year: “I don’t think the worst thing that could happen to me is having a child with special needs. I think the worst thing would be to raise a child who is cruel to people with special needs.” -Matthew Michelson Butman

Special needs come in endless variety, for those who have disabilities and those who don’t. In the end, we all just want to be seen, accepted and included. We all want to belong. I prayed this morning that Corin would be safe, that his mind would be sharp and he would love learning, that he would make good friends. But most of all, I prayed that he would be kind.

Happy second grade, sweet boy. It never stops feeling like I’m leaving a giant piece of me in that classroom.

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Tomorrow is sister’s turn to start her last year of preschool.

No Barriers

I have not been a very faithful blogger. There are several reasons for that. A big one is a relatively new project that has taken quite a bit of my time.

Last November, I met for the first time with a small group of lovely people who comprise the new No Barriers special needs ministry team for the church we attend. It’s something that’s been percolating for a long time, at least since spring of 2016, when I attended a regional conference on inclusion in faith communities.

This is not new territory for me. My dad is blind as the result of a bicycle accident. My parents got involved in church disabilities ministry when I was still pretty young, and I spent a lot of time traveling with them as they conducted awareness and accessibility seminars at Seventh-day Adventist churches all over Florida and, eventually, all over the South. It wasn’t always the most thrilling way for a pre-teen and teenager to spend the weekend, and I’ll be honest: I didn’t envision myself taking on that mantel as an adult.

But, as so often happens, life took some turns, and here I am. I believe churches should be a place where people of all abilities find inclusion, belonging and purpose. I saw needs around me, and after I attended that conference last year, a fire was lit. After talking to our senior pastor, I appointed myself the special needs ministry coordinator for our church and set about recruiting some help. I found some fantastic resources, including the Joni and Friends ministry Irresistible Church.

Our No Barriers team spent some time in the beginning talking to members and families of members with special needs. How were we doing? What was working? What could we do better? We’ve made some small changes as a result, like creating a larger diaper change area for a family with an older child who wasn’t able to fit on the infant-sized changing table. We’ve been working on general accessibility by obtaining a stair lift (donated by a business that was installing an elevator to replace their lift), improving signage for accessibility features, adjusting the pressure required to open doors…

We’ve been at this now for seven months, and tomorrow is a big day for our baby ministry. (I should explain that we attend church on Saturdays, just in case you’re confused by the day.) It’s the first week for our buddy program for a lovely 13-year-old girl with Down syndrome. The program is pairing this young member of our church with two peer volunteers who have gone through some simple training. They will alternate weeks to provide one-to-one support, helping their friend to participate with her class, freeing her mom to attend an adult class, and bringing down some of the barriers that separated this family’s experience from that of other members.

I’ve spent a lot of time over the past few weeks and months on program policies, training materials, log sheets and information binders, but this week is happening because other members of our church – many of them members with no direct connection to special needs – have shown they care and are willing to step up. Church is not a place for perfect people. We’re all pretty screwed up and dealing with our own personal failings. But when church is working like it should, it’s a place where we come together and support each other as we try to know God better and let Him work in our lives. Church as it should be is a place where we allow our needs to be known and watch as God moves us to take care of each other. Church as it should be is a compelling place to serve and belong.

I don’t know exactly how tomorrow will go. We’re new at this, and I have a feeling there will be hiccups along the way. I honestly have no idea what I’m doing most of the time. I don’t know where all this is headed long-term. But I sense God at work, and I am so grateful that when I have presented the needs I see, people around me have responded with genuine enthusiasm and caring. It gives me hope in a world where too often, the name Christian is wielded as a weapon to bludgeon and divide.

 

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. 

Through the wardrobe

Corin turned seven on Saturday. I wrote my mushy post on Facebook, so I’ll skip the sentiment and get right to the good stuff: his Narnia party. We’d been reading Prince Caspian when he chose the theme, so he requested a Caspian costume that also worked for “favorite book character day” at school and will likely make a reappearance at Halloween. He put it on as soon as party day arrived and didn’t take it off until bedtime.

You may remember that Corin’s room is Narnia themed, so we were able to repurpose plenty, and some of the party decorations will live on upstairs. Inexplicably, I wasn’t all that on it with photos this year, so I missed documenting some things, including the little snow covered trees inside our wardrobe entrance, transported all the way from Georgia by my long suffering in-laws. But, here’s the best glimpse I have of our Narnia adventure.

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Corin’s favorite feature (that’s him lying on the pillow)  – the tent, a.k.a. the pavilion at Aslan’s How

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We tried story time in the tent, but a few paragraphs of A Horse and His Boy was all we could manage before attention waned. Let’s face it, everyone just wanted to get to the gifts.

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As Narnian a menu as I could conjure: cheese platter (clockwise from left: blueberry stilton, dill havarti, brie, English aged cheddar, mild goat), “venison” (rolled veggie turkey slices for our mostly vegetarian crowd), apples, berries, nuts, dried figs, raw veggies, lots of bread, butter and jam, and, under the dome, my first stab at Turkish delight.

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Corin was pretty stoked about the “royal cups.” It was high times drinking from stemware, even the kind that has to be assembled.

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Brownies and mint chocolate chip ice cream, as requested

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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.