3 Ways to Connect with the Down Syndrome Community

Martin Luther King, Jr. once said, “Let’s build bridges, not walls.” His words offer a challenge worthy to be considered.

For many years, walls were built to keep people with Down syndrome separate from their families and communities. Those with an extra chromosome were seen as immoral, the result of sin, a burden on the entire family.

Medical walls were built by surgeons who refused to provide life-saving surgeries for newborns diagnosed with Down syndrome.

Domestic walls were built by ‘experts’ who strongly encouraged institutionalization and forced sterilization of children with Ds.

Verbal walls were built by degrading language used to describe people with Ds.

Vocational walls were built by employers paying less than minimum wage for employees with Ds.

Educational walls were built by schools that will not include or provide appropriate services for students with Ds.

How sad that we humans have used our time, energy, and resources to stack bricks rather than dismantle them.

In the U.S., the walls of institutions and other social barriers continue to fall but there are still (less obvious) walls that need removed in order to include and build relationships with people who have Down syndrome. Sometimes these walls look more like fear, ignorance, or apathy:

  • Fear: “I don’t want to inadvertently say something wrong or offensive so I’ll just not say anything.”
  • Ignorance: “I don’t know how to relate to those people. I just don’t know what to say.”
  • Apathy: “I don’t feel like connecting. And why should I? It’s not my job.”

If we’re honest, each of us has some resistance or even aversion toward certain people who are unfamiliar or seem annoying to us. Avoidance is an emotionally safe response, the default that keeps us from risking a few splinters and laying down planks to bridge the divide. In church culture this avoidance might be couched in religious language, “I just don’t think I’m called to serve those kinds of people.”

I’m not suggesting that everyone in a church community should work exclusively with those who have disabilities. I am however, suggesting that those of us in church culture may be guilty of using religious language as an excuse to distance ourselves from those we’re called to engage. Serving with an ‘us-them’ perspective in any capacity isn’t effective for wall removal and bridge building–nor does it reflect the character and work of Jesus, the One many of us claim to follow.

So, how can we break down walls and build bridges to connect with those who live outside our socio-cultural circle? How can we move from knowing about Down syndrome to actually knowing people with Down syndrome, especially if they’re not a part of our daily life?

I offer these simple steps.

3 Steps to Connect with those who have Down syndrome:

1. Initiate. When you’re out in public and see someone with Down syndrome, make eye contact, smile, and say ‘hello.’ This simple gesture reminds the person with Ds and the parent of a child with Ds that they are worth your attention. If you really want to go bananas, you might even introduce yourself (gasp!). Take a moment to chat. Look to the parent or caregiver for cues, if needed. Ask about their day, the purpose of their outing, school, work, etc., (any topic you’d chat about with a typical family). Most parents appreciate when people make the time and effort to introduce themselves and get to know their kids. Don’t let fear, previously awkward meetings, or apathy squelch an opportunity to engage. You’ll likely leave that brief encounter encouraged and inspired–but even more, you’ll assure a family that they matter.

2. Invite. If you know of someone with Ds, a parent raising a child with Ds, or your child has a classmate with Ds, include them whenever you can. Whether you’re hosting a birthday party or a gathering in your home or meeting friends for a playdate, extend the invitation, even if you don’t know them well.

Sam and I recently attended a birthday party for a kid in his class at school. I was nervous as we knocked on the door of an unfamiliar home, where I wondered if he would be included. I silently chastised myself, as one of Sam’s classmates greeted us at the door and welcomed him with great enthusiasm and a gentle hug, “Hi, Sam! Hi! Wow! Sam, I didn’t know you were going to be here! Yay! Sam, you’re here!” This 5 year-old boy was so genuinely thrilled to see Sam that I dropped my purse and stood by the door for a minute, struggling to swallow the lump in my throat. I didn’t realize how much I wanted him to be included, to be seen and valued by his peers.

Be like Sam’s classmate and send the invite. You’ll leave a grateful parent speechless.

3. Volunteer. This third step in connecting with people who have Ds seems most effective with specific, consistent work over time. Your faithful presence in local organizations and programs and/or in a church setting provides opportunities for you to regularly connect with the Down syndrome community.

Our non-denominational church has worked hard to specifically include those with different abilities. They provide a buddy for Sam (and several other kids) every Sunday. Once a month, they host a family respite night, as well as a parent group for those raising kids with different abilities. Free childcare is provided at each monthly gig for all of the kiddos. Yep, you read that right. ALL of our kids. For free. I get all verklempt just writing about it.

This inclusive approach works well with committed volunteers (like you) and a compassionate community whose leadership not only values people with different abilities but also provides support, resources, and encouragement to their families.

For those of us who have minimal, if any, contact with people who have Down syndrome, we would do well to initiate, invite, and volunteer wherever and whenever we can. Choosing to do so will help dismantle walls and build bridges that connect us to a community full of wonder, where we can love the oft excluded, learn from each other, and find our lives enriched.

If you’re interested in connecting and developing relationships with those who have Down syndrome or finding organizations that specifically serve those with intellectual disabilities, here are a few options to get you started. Check your local area for more details.

  • National Down Syndrome Society: The leading human rights organization for all people with Down syndrome. Click here to learn more: https://www.ndss.org
  • Buddy Walks: Annual walks held throughout the country, with the goal of promoting education and acceptance of people with Ds. Click here to learn more: https://www.ndss.org/play/national-buddy-walk-program/buddy-walk-faqs
  • Special Olympics: This is the world’s largest sports organization for people with intellectual disabilities. A variety of volunteer positions are available to help serve and support athletes and their families. Click here to learn more: https://www.specialolympics.org
  • Gigi’s Playhouse: An organization that seeks to “change the way the world views Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. We offer free therapeutic and educational programming to individuals with Down syndrome and their families.” Click here to learn more: https://gigisplayhouse.org
  • Night to Shine: Sponsored by the Tim Tebow Foundation, Night to Shine is an annual global event where people with disabilities participate in prom. From the limos and red-carpet entrances to professional photographers, karaoke, and dancing, this night was created to remind participants of their inherent worth. Click here to learn more: https://www.timtebowfoundation.org/ministries/night-to-shine

If you want to diversify your social media contacts by including people with Down syndrome, I recommend Instagram to follow these educational and entertaining accounts:

@theluckyfewofficial

@eicherumba

@changingthefaceofbeauty

@happysoulproject

@cedarsstory

@karenjp0915

@lifewithmicah

@jimboistheman

@rubysrainbow

@globaldownsyndrome

@littlest_warrior

@ndssorg

@johnscrazysocks

@savedownsyndrome

 

Where do you see walls in your community and how can you help dismantle them?

Where do bridges need built instead?

What would it look like for you to initiate, invite, or volunteer?

*Bridge photos by Arcaion at pixabay.

How Down Syndrome Typically Affects Typical Siblings: An Interview with The Big Kids

When Glendon & I shared with The Big Kids that we were planning to adopt a child with Down syndrome, they didn’t fully understand the implications. At ages 5 and 3, how could they? In their young minds, a new baby with Down syndrome was simply a new baby to them and they were thrilled.

Many families who’ve received a prenatal diagnosis of Down syndrome wonder how a child with Ds will impact their typical kids. I recently read a story of expectant parents who worried that a child with Ds would lead to resentment and future estrangement from their older children. This troublesome thought became their main reason for termination. I grieve that they were left alone in their fears, with no one really available or willing to listen, support, and possibly offer a bit of hope.

While I certainly want to listen and be present for others in their fear and pain of a new and shocking diagnosis, I also want to provide them with a more complete picture. What these dear parents might not have known is that the extra care, time, and resources required to meet the needs of a child with Ds will impact typical siblings–but not to their detriment. In fact, research shows that compared to their peers, kids who have a sibling with Ds demonstrate a higher level of maturity, compassion, empathy, and a deeper understanding of what really matters in life. Of course, every sibling handles familial adjustments differently but these outcomes seem to more accurately reflect reality.

Several families in the Down syndrome community tell me that their typical children adore their sibling(s) with Ds. Of course, there may be medical hurdles to jump, social-emotional issues to manage, and delays to navigate but numerous studies indicate these are minor issues for typical siblings. The meaningful experiences and valuable lessons seem to far outweigh the *perceived* negatives.

For further evidence on this matter, I went straight to the source(s) to get their perspective on Down syndrome.

I close with a recent interview (done separately) with 10 year-old, Selah, and 8 year-old, Jude. As with every conversation in our home, they were encouraged to be honest without fear of my response. I recorded their answers exactly as they shared them–with no editing.

What did you think when we told you we were planning to adopt a baby with Down syndrome?

J: I remember I was real happy.

S: Excited.

How did you feel when you first met Sam at the hospital?

J: Happy. It was awesome to have a little brother. I thought his tubes were cool.

S: Kinda weird because he was attached to all those cords. He was really tiny.

What do you remember most about Sam during his time in the NICU?

J: The tubes that came out of his mouth, like when he breathed out all the bad stuff. I was happy to hold him.

S: He smiled when we held him. He made funny faces when we fed him the bottle.

What was your favorite thing about Sam when he was a baby?

J: I could easily hold him.

S: His laugh–that’s still one of my favorite things.

What was the hardest part for you with adopting Sam?

J: When I learned about racism and his brown skin.

S: It was a long time away from our home.

What do you enjoy most about being a big brother/sister to Sam?

J: He tackles me. I get to cuddle with him.

S: He hangs out with us. He wants to be with us–he plays games and tag with us.

What does Down syndrome mean to you?

J: It means you will be slowed down in some things like being potty trained. It means you might not be able to speak up to bullies because you have a hard time speaking. I feel like Down syndrome makes Sam Sam. He wouldn’t be himself if he didn’t have Down syndrome.

S: It’s like an extra gift. Some people think it’s an issue but it’s like a prize–like you win Down syndrome.

What is it like having a brother with Down syndrome?

J: I like it. Down syndrome makes Sam cuter. It makes me happy. And if Sam didn’t have Down syndrome, I might not know what it’s about or what it’s like for others.

S: Two things: One, it’s awesome. But two, it can be scary because of low muscle tone and Sam’s breathing sometimes.

What is the most challenging part of having a brother with Down syndrome?

J: Sometimes he needs extra care and attention. And I have to share my room.

S: People staring or getting annoyed with Sam because they don’t understand he needs extra support sometimes.

What is your wish for Sam?

J: That when he grows up he’ll have friends and a good job.

S: I have so many! That he’ll be able to do what he wants and Down syndrome won’t–and shouldn’t–affect that. That he’ll be able to stand up for himself. And that he’ll tell us when he has problems, that he won’t keep it to himself so we can help him.

For further reading on this topic, check out these resources:

ndss.org

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348944

http://downsyndromepregnancy.org/sibling-perspectives-on-down-syndrome

 

How has Down syndrome made a difference in your life? Your kids’ lives?

Would love to hear from you!

When A Diagnosis Determines Your Worth

If you Google ‘Down syndrome’, you’ll find pages of online organizations and dictionaries that provide both general and specific definitions. Most will include something like this:  

“A congenital condition characterized especially by developmental delays, usually mild to moderate impairment in cognitive functioning, short stature, relatively small head, upward slanting eyes, a flattened nasal bridge, broad hands with short fingers, decreased muscle tone, and by trisomy of the human chromosome numbered 21.”

~Merriam-Webster English Dictionary

As one who seeks to communicate clearly through written words, I understand the need to provide adequate information and appropriate descriptors but as the parent of a child with Down syndrome, seeing his diagnosis in print is difficult. Those definitions simply do not capture the wonder that is Sam but, to be fair, they’re not designed to do that.

Sam, 1 month old–fresh from the NICU

I know that my son’s value is not determined by his diagnosis but sometimes our world tells a different story. The history of how American culture defined, perceived, and treated people with Down syndrome is quite dark. Here’s a brief timeline:

  • 1773. First insane asylum opens in Williamsburg, VA. In the next 200 years, thousands of people with intellectual disabilities were funneled through various state-wide institutions.
  • 1838. First document to ever record people with intellectual disabilities as ‘idiots’ (to distinguish from those who were classified as ‘insane.’)
  • 1866. John Langdon Down, who discovered Ds, refers to the collective traits he discovered as ‘Mongoloid’ because their facial characteristics resembled those from Mongolia.
  • 1883. Sir Francis Galton first uses the word ‘eugenics’ to describe how Americans must assign value to those with intellectual disabilities. As a result, laws were passed, demanding forced institutionalization and sterilization of those with disabilities.
  • 1912. The Kallikak Family, a best-selling book is released by Henry H. Goddard. The book builds and perpetuates the false premise that intellectual disabilities are connected with immorality. Mass social hysteria ensues, calling for forced sterilization and institutionalization.
  • 1939. Hitler demands the extermination of 200,000 people with intellectual disabilities–many with Ds.
  • 1946. Parenting guru, Benjamin Spock, states in his popular book, Baby and Child Care,If [the infant] merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.” (p. 478)

Not until the 1960’s and 70’s did the U.S. begin to shift its perspective, thanks in part to President John F. Kennedy. S L O W L Y, public outcry led to the closing of institutions and the passage of human rights laws as parents, caregivers, educators, and people in power demanded equality for people with disabilities. Their tireless efforts and stubborn voices blazed trails for the rest of us to follow. The trail has widened as more of us speak up for and seek to empower those with Ds, while educating the general public on the benefits of inclusive spaces.

Sam, 2.5 months old

Humanity. Equality. Rights. Inclusion. These speak to progress, yet within the highly educated medical community, most doctors and geneticists continue to apologize to women when disclosing a prenatal diagnosis of Ds, often just moments before they suggest termination as a solution. Despite their ‘smarts,’ many medical professionals are quick to provide a dark and limited option for expectant mothers, “Either your life will be really hard or you can abort.” (Actual words spoken to a friend.) In a world where we can choose from 15 different kinds of toothpaste, this either-or nonsense seems like a cruel irony.

As I write, many European countries are inching their way toward eradicating Down syndrome. With prenatal testing considered normative (and I’m not at all judging the tests), the number of abortions continues to rise. If we believe that a baby in a mother’s uterus is a human, this would be genocide, no?  

Cognitively impaired.

Idiot.

Feebleminded.

Mongoloid.

Delayed.

Retarded.

Problem.

Hardly human.

Really hard life.

Words like these make it easier to justify the extermination and ongoing exclusion of a vulnerable people group and the mothers trying to decide whether it’s worth the lifelong risk of birthing them. Why bring them into a world that doesn’t value them in or out of the womb? It seems we’ve failed both women and children.

Sam, 1 year old

I wonder, is this really the kind of culture we want to sustain? To refuse to stand with women who need support (financial, emotional/mental, medical)?

To leave pregnant women with limited options at a crucial time?

To offer an apology when she’s given a prenatal diagnosis?

To end life because of a possible diagnosis?

To vote for the traditionally *pro-life* political party, even when those candidates won’t sign bills that provide equal opportunities and fair wages for people with Ds? (I’m looking at you, Republicans.)

To maintain the status quo by keeping people with Ds out of classrooms and work spaces and airplanes?  

To associate only with people who look like us by hosting parties and gatherings in which we don’t invite those who have Ds?

To refuse to consider the authenticity of our ‘seeker friendly’ churches, which don’t really create space or provide resources for those with Ds?      

If we claim to be pro-life advocates, we need to rethink the issues of diagnosis and worth and inclusion and what they mean for both mothers and their children with Down syndrome. 

Sam, 2.5 years old

We must provide ongoing support and updated, accurate information when expectant mothers receives a prenatal diagnosis of Down syndrome. If we really value women, we must work to improve employee maternity leave and insurance coverage. (In related news, Down syndrome is considered a ‘pre-existing condition’–which means ‘limited/no coverage’ with most private insurance companies.)

We must use appropriate language and terms and offer more than one option for expectant moms.

We must remember that a baby in the womb deserves a chance to be born.

We must be graciously present for women no matter what they decide.

We must show up for new moms and their families, embrace the gift of their friendship, join them in Buddy Walks, vote for candidates who advocate for the differently-abled, and find other ways to engage this new community.

Children with Down syndrome are more than limited definitions, their mothers more than mere recipients of a diagnosis. Both bear Divine fingerprints, offering beauty, joy, and delight to our world–if we’re willing to see. We must endeavor to become a society that takes their hands and says,

“You are seen. You are loved. You belong.”

What Down Syndrome Can Teach Us Now

When I married nearly 16 years ago, I never dreamed I’d be parenting four kids, one with Down syndrome. I had no intention of managing what feels like a circus most days–not that I was opposed to circus life or extra chromosomes–I just wasn’t thinking about motherhood in any form when it chased me down.

After birthing my two oldest and struggling with post-partum depression, I waved the proverbial white towel, calling a truce with my mind and body. I needed mental space and rest to find my sanity (and sleep) with two Littles.

 

 

 

But, dear readers, babies just don’t keep. Eventually, diapers morphed into undies, sleepless nights rolled into sweet dreams, and my once helpless cherubs began to feed and dress themselves. ThankyaJesus.

I shed the zombie look (sort of) and my capacity to form coherent thoughts returned at last (still debatable). This was the season in which I sensed a holy nudge, a gentle Voice asking, “Are you willing to let My dreams become yours? Are you willing to rethink your own ideas about your family and future?”

As many of you know, that nudge led to prayers and conversations and new dreams and eventually, a baby boy with Down syndrome–our Sam.

Prior to Sam’s arrival, I read all I could about Ds, sought advice from experienced parents and professionals, and grew in my awareness of potential issues related to this diagnosis. I researched possible medical complications, physical care, therapies and education, finances, future work, state and federal policies, and our culture as it relates to people with different abilities. Even with all my experience working with people who have Ds, months of personal education, and now 4+ years of parenting Sam, I’m still discovering new truths and learning important lessons.

In a time of divisive politics, hateful rhetoric, and social media outrage, I want to highlight this truth as we celebrate Down Syndrome Awareness Month:

Choosing to believe stereotypes creates distance between ‘us’ and ‘them.’

While Ds is its own culture with a handful of common traits, those with Ds are individuals. Each person brings his own genetics, personality, family, life experiences, needs, preferences, education, and more. Just because we might know a few people with Ds who have sunny dispositions doesn’t mean all people with Ds do. (This is probably the most common stereotype.)

Like any social group, people with Down syndrome cannot be put into a ‘one-size-fits-all’ category. When we do that, we miss the unique gifts found in each person. 

This idea goes beyond the community of Ds to other neighbors who don’t typically fit the majority profile, whether immigrants, refugees, Muslims, people of color (POC), folks with disabilities, the incarcerated, those who identify as LGBTQI, or anyone else who might be considered the ‘other.’ 

Choosing to believe stereotypes can actually prevent us from learning from people who differ from us, who have very different experiences, who look at life through a lens other than our own. We take one conversation or experience or person and craft stories about what we think is true of an entire group and as a result, fail to see the Divine imprint on each human.

In our pride and ignorance, we may write another narrative, one that pens an incomplete, often negative story. Confident we have the whole truth, we often assign motive and value to groups of people we haven’t taken the time to know. Instead of graciously moving toward individuals, we use our limited knowledge and assumptions to determine whether to engage ‘the other.’ I wonder who we miss connecting with when we do this? 

 

Photo by gerault at pixabay.com

I’ve noticed people writing a limited story about Sam. In social settings, I watch as kids and parents determine his physical differences. Most observe that he doesn’t engage like a typical peer, his mannerisms more juvenile, his marked delays perceived as a nuisance. I witness the furrowed brows, rolled eyes, heavy sighs, and the turning away to avoid him–my son, the ‘other.’ With imaginary pen in hand, they hastily make note, “This kid is so annoying. I don’t know how to relate to him. I’m uncomfortable. I’m going to find someone who’s more like me.” 

I grieve not only for what this incomplete storytelling means for Sam as he begins to understand his differences but also for what those kids and their parents are missing by choosing to ignore him. 

I wonder what we might be missing, too, when we don’t acknowledge the image of God in the ‘other’, when we refuse to find ways to connect with those who differ from us.

Sam’s life reminds me to resist the easy route of stereotyping, to lean in and listen to those whose perspectives and lifestyles don’t mirror my own. Down syndrome spurs me on to move closer to others so I can more clearly see the Imago Dei in each person and love them as I’ve been loved. 

 

Who might you be avoiding because of your assumptions or limited perspective?

What is one step you can take this month to move toward someone (or a particular group) you consider ‘the other?’