The Lucky Few Foundation is here. Celebrating our Launch with 21 Stories in 21 Days

Hello, friends!

Today is a big day for us here at The Lucky Few. When I started sharing the glimpses of our lives on social media ten years ago, I never would have imagined it would lead us here. Everyday, I am thrilled and grateful to see what this amazing, messy, crazy life has given us. As The Lucky Few has changed and grown, our mission too, has evolved as our opportunities to truly make a difference develop. After much reflection on our part, it was clear that our efforts to shift narratives and create a space where everyone belongs wouldn’t just benefit us and our family, but everyone. And so, we decided to yet again embark on a new and terrifying adventure and start a non-profit, The Lucky Few Foundation, to support our mission and allow us to reach an even wider audience. 

It is my absolute honor to share The Lucky Few Foundation with you all. What is The Lucky Few Foundation? It is a storytelling machine that will work to highlight the humanity within a Down syndrome diagnosis. While the Avis family will still continue as The Lucky Few brand, and I will continue to write and speak as an advocate for inclusion, our work with the Foundation will be geared toward sharing the stage with others. We love sharing our story, and we are ever so grateful for the support that has come along with sharing our story. But it is important to us that we are not the only ones on stage. That others have the opportunity to speak. 

We know that sharing our experiences has allowed so many people to see the beauty and magic within a Down syndrome diagnosis, but we also know that there are millions of people out there who have similar stories. People whose intimate knowledge and understanding of Down syndrome, either as a person with DS or someone who loves them, can also change minds and hearts. Their stories deserve to be told, and that is what The Lucky Few Foundation sets out to do.

This March, in honor of World Down Syndrome Day, we will be sharing 21 stories in 21 days through the Foundation’s project, This is Down Syndrome. These stories feature people with Down syndrome of different ages and walks of life and the people closest to them.

We kick off the month with Cole Sibus, an impressive young man and actor who most recently starred in ABC’s Stumptown. Cole happens to be our special guest on The Lucky Few Podcast this week. Listen to the episode here. We’ll continue the month releasing a new story everyday, leading up to WDSD on March 21st, 2022 and another big reveal!

That’s it for now friends; I hope you join us this month in reading, sharing, and celebrating these stories as we officially launch The Lucky Few Foundation. 

Shouting their worth and shifting narratives,
Heather Avis
Founder of The Lucky Few Foundation, Narrative shifter • New York Times Bestselling author

Happy to Belong - The Story Behind Our New Logo

In 2012 I started an Instagram account @Macymakesmyday with one purpose in mind: share a photo of a day in the life of a child with Down syndrome in order for the world to have a better understanding of what it really means to live with and love a person with Down syndrome.

Even all those years ago, before I put language to it, I was committed to shifting the Down syndrome narrative.

Five years later, in 2017, my first book, The Lucky Few was published. And over the years through additional book deals, speaking engagements, brand collaborations, and podcasts, The Lucky Few has grown into a global household name in the Down syndrome space.

As a person who never set out to be a New York Times bestselling author, podcaster, speaker and influencer (and who EVERYDAY is thrilled and humbled to my core to be all those things!) It's taken some shifting of my own throughout the years to understand what exactly it is we do here at The Lucky Few, why and how.

These past few months our team has had the straight up privilege of working with JB Becker @becker38 of @tykebrandstudio to help us answer these questions. We have so much to share over the next few weeks but first let’s answer the questions: What is The Lucky Few? What do we do and why? The Lucky Few is an invitation to build a kinder, more inclusive world. This is accomplished through a combination of advocacy and activism, narrative- shifting and storytelling. We exist to share stories because knowing and understanding Down syndrome is not the same as knowing and understanding a person with Down syndrome.

The work we’ve done to clarify our message has also led us to our new logo! It is a celebration of what it means to be different, to be human and to be beautifully imperfect. We hope you love it as much as we do. Friends, we are so honored you have chosen to join us in this narrative shifting work which we started in this space, without even realizing it, all those years ago! #theluckyfew #narrativeshifter #everyonebelongs

Middle School Soccer: A lesson on inclusion

Last week, feeling all flustered with awkward feelings of middle school insecurity, I attended the first soccer practice for the girls middle school soccer team. Lord knows I wasn’t there to participate but rather for my seventh grade daughter Macy. She doesn’t really want to play soccer. Sports with balls aren't really her thing. But she wants to be on a team, to be part of something, plus she is really good at stretches and warm-ups! Macy has Down syndrome and currently she is in a self-contained special education classroom at her school, making her options for inclusion at school pretty limited. So when I got the email about soccer tryouts, Macy and I talked about if she’d be interested in being on the team as a helper and cheerleader of sorts. Her face lit up and she couldn't help but giggle as we chatted through what it might look like for her to join the team in that capacity. I did some digging and reached out to ask if we could get creative and Macy could join the soccer team as a team manager, and the answer was yes. 

Practice for the team was after school. Since the sports programs at her school are not built upon an inclusive foundation, I asked if I could be there on the sidelines for the first few practices in case Macy needed support. I never played soccer for my middle school so last week she and I both showed up to our first ever middle school soccer practice. It turned out Macy didn’t need any additional support from me. She followed along with the stretches and did each task the coach directed her to do. She stuck with the team and did her job. (An important side note here: there is nothing wrong with needing additional support. She is not more worthy of a space on the team because she didn’t need support, and she would not be less worthy of a space on the team if she did. Both needing and offering support is a beautiful thing. We can explore that more later!) 

When practice was over all the girls ran to get their backpacks and water bottles. Macy stood around with the girls for a bit in that awkward middle school way. Before the awkwardness of the standing-around-with-everyone-ignoring-her took over me and I started to say or do things I may regret, I walked towards Macy and said, “time to go Macy.” She stepped away from me and pointed to one of her teammates and asked, “what’s her name?” The girl shifted in her stance and considering how close Macy was standing to her, pointing her finger at her and asking what her name was, it was obvious the girl heard Macy talking to me, but she remained focused on the conversation she was having with another teammate.

So I replied loud and clear, “I don’t know her name, babe. Go ahead and ask her.” 

So Macy walked up to this girl and said, “What’s your name?” 

I wish I could make this a sweet story about friendship and how this middle school girl smiled at Macy, told her her name, asked Macy’s name in return and then together they skipped across the soccer field linking arms. But alas, that’s the stuff made for movies, or made for kids without Down syndrome. 

Instead it went something like this: Macy walked up to the middle school girl. Her first response was to ignore Macy. She turned away and talked to another girl next to her. Macy persisted because sometimes for better and sometimes for worse, she doesn't understand social nuance. Again Macy asked, “What’s your name?” This time the girl looked at her with a look landing somewhere between confusion and disgust. So, I chimed in, as calmly and sweetly and directly as possible “She wants to know your name sweetie.” 

To which she looked at me, not Macy and said, 

“Oh, it’s Mia*.” Then turned back to her friend and they kept talking. 

Here’s the thing with the Mias in this world. It’s easy to look at her and be disappointed in how she responded to Macy. But the reality is, how can a middle school aged girl know how to interact with the girl with Down syndrome who has less intelligible language skills when she’s spent her whole life separated from her? How can we expect a sixth grader to take the steps needed to build a meaningful relationship with a disabled peer when it was decided, starting in preschool, the Mias and the Macys would be placed in separate classrooms. Or, from time to time the Macys would be “mainstreamed” into the Mias class with a lack of inclusive practices being implemented, making the Macys visitors in Mia’s classroom, maintaining this idea that the Macys are the “other.” 

We talk about raising up good humans, teaching them kindness, inclusion and empathy in hopes they grow up to be kind, inclusive and empathetic adults. Then we sign them up for schools, dance classes and soccer teams built upon the foundation of exclusion. We show up with ease in these spaces with our non-disabled kids, participate fully with other non-disabled peers, never questioning why none of the kids in the classroom, in the community, or on the team have a disability. Or worse, unable to notice the group of kids with disabilities all grouped together over there in the “special class,” all the while perpetuating ableism in our schools, community, and extra curricular. Which further perpetuates ableism in our own homes and in our children. 

Over the years as I’ve advocated for spaces where Everyone Belongs, I hear from parents of nondisabled children who really do want their children to have disabled friends, or at the very least expect their children to treat disabled people kindly and respond in an inclusive manner. I can’t tell you how many people have reached out to me to ask “But how can I help my child develop friendship with their disabled peers? Where do I start? What should I do?” My answer? Make an effort, get creative, join something that already exists or start something new. If inclusion is not happening in the spaces your child currently finds themselves, demand it, fight for it, insist on change. This is what parents raising children with disabilities do all the time. Take Macy joining soccer for example. In order for it to work, in order for her to have an opportunity to develop relationships with her peers on the soccer team I had to be aware of what opportunities were out there. Then I had to reach out to the powers that be, ask a lot of questions, set up expectations, anticipate needs for support, and show up at a certain time and place. In addition,  all the onus to make this work is on the person with the disability. This means that while I’m working behind the scenes to coordinate the opportunity, I’m having multiple conversations with Macy about expected behavior, and how to interact with her teammates. I showed up to practice in the beginning to take note of areas where she may need extra support and help her navigate the relationship part, (Hi Mia!). Can you see how in order for this inclusive opportunity to work all the onus falls on Macy, and me? All the while it’s safe to bet that no one is having a conversation with Mia about how to make an effort to be Macy’s friend. No one is talking to her about how it’s okay to feel uncomfortable with something unfamiliar, like Down syndrome, but how to move past that towards a relationship. No one is telling Mia to seek out Macy and what she can say and practicing those conversations. Mia’s parents aren’t calling the coach to ask about the ways the team strives for inclusion and to be a place where everyone belongs and insist it do so. Like I’ve said so many times before, inclusion is for all of us. And if we truly do want an inclusive world, and to have spaces where everyone can belong, then all of us have to own the responsibility, not just those who find themselves excluded. 

When we got to the car after practice I looked over at Macy to ask her what she thought about being the girl’s soccer team manager but before I could ask I notice she was having a moment of self-talk and the conversation she was playing out with herself went something like this:

“Oh hi what’s your name? Mia!”

“What’s your name?”

“Oh me? My name’s Macy.”

“Hi Macy.”

As her mama I recognized right away what was happening next to me in the front seat of the car. Macy was reenacting the conversation with Mia, but in this rendition, the one she hoped for, Mia asked Macy her name in return. 

It reminds me of a quote from inclusion activist Verna Myers who says, “Diversity is being invited to the party; inclusion is being asked to dance.” It’s a straight forward visual of how diversity holds little value without inclusion. I mean, what’s a party without dancing? Another way to see it, a way to directly apply it to Macy on the soccer team, diversity is being on the team, inclusion is saying, “Hi, what’s your name?” 

(*Name changed to protect the teammate’s identity. Any similarities with the name is purely coincidental.)

Let's Put Our Energy Into Dismantling Ableism, Not Improving People with Down Syndrome

A common narrative around a Down syndrome diagnosis: A new parent finds out, whether in utero or at birth, the child they’ve been expecting has Down syndrome. The news is followed by feelings of shock, confusion, anger, grief, and devastation, just to name a few. When the diagnosis is given in utero, the majority of parents choose to terminate the pregnancy. For the parents who choose to parent their child the feelings don’t just go away. Everyone has their own ways of working through grief and eventually, usually within the first year of the child’s life, the parent(s) does a complete 180, often feeling lucky to have a child with Down syndrome. 

I know this is not the narrative for every parent having a child with Down syndrome. But by now I’ve met or interacted with thousands of those parents and it is a very, very common narrative. 

Shortly after we brought August home, a mom who followed our journey via Instagram reached out to me. She had a one year old daughter with Down syndrome. She was reaching out to say she loved how we embraced August’s Down syndrome diagnosis from day one. She said she looked back on the first year of her daughter's life and felt distraught about the sadness and grief she felt about her child. A year down the road her love and adoration for her daughter with Down syndrome was so pronounced, she was having a difficult time understanding why she felt so sad in the beginning. She told me, “I wish I could go back in time and enjoy her instead of feeling so sad about who she was!”

I don’t share any of this to make any parent feel badly about their feelings and reactions about their child’s Down syndrome diagnosis. When it comes to how new parents need to navigate it, there is no judgment, only grace, upon grace, upon grace. 

Both my eldest and youngest have Down syndrome. They also both came to me through adoption, adoptions which would not have taken place if they did not have their diagnosis. Although my children came to me through adoption, as a human in our society, I was not immune to the grief and devastation attached to a Down syndrome diagnosis. I did not want a child with Down syndrome and clearly stated that on my adoption forms. How Macyn came to be my daughter is a story too long for a blog post (I actually wrote a book about it!). She was not the first, second or third choice for my baby. Still, she managed to make it into my arms and the narrative of grief and sadness, which is tragically attached to a Down syndrome diagnosis, left me very quickly. In fact, before she even came home I did a complete 180 and started telling everyone who would listen just how amazing and wonderful my child with Down syndrome was, and how lucky I was to be her mama. 

As the years have passed I have spent a lot of time thinking about, and researching, why exactly it is new moms getting a Down syndrome diagnosis still feel such a strong negative reaction when the majority of the parents who have children with Down syndrome no longer feel that deep sense of sadness connected to the diagnosis. My first conclusion was that sadness is attached to a missed expectation. Parents are expecting and dreaming about one thing and then it is something different. There is grief found in the loss of our expectations. I still believe this to be true, but I think it’s a much smaller piece of the negative narrative attached to a Down syndrome diagnosis. 

The fact of the matter remains, babies with Down syndrome are born into a world saturated with ableism, the West, arguably, the most infected. And once we hold our new baby in our arms the ableism doesn’t just disappear from our lives. Parents who have made that 180 degree turn and who have gone on to shout the worth of people with Down syndrome may still be doing so without having addressed the ableism in their own lives. Because one of the greatest tragedies when it comes to ableism is that it is so deeply rooted in our society it’s extremely easy to miss. Even for, and maybe especially for, people who love a person with Down syndrome. 

You may not like what I have to say here, but please hear me out:

I’m concerned the Down syndrome community is perpetuating the very ableism we believe we are combating. Ableism can disguise itself in words such as “can still do” and “but.” The perpetuation may begin when a family member offers condolences quickly followed by hope, “I’m sorry your baby has Down syndrome. But, did you know people with Down syndrome go to college?” Or when a doctor says something like, “They will have challenges but they can still do all the things other kids can do.” It’s when people in the world, including those of us raising a child with Down syndrome look at new parents, eyes swollen from tears of grief and disbelief, holding their tiny baby in their arms hearing things like, “but look at this person with Down syndrome who is going to college, driving a car, owning a business, modeling, reading, writing and speaking so clearly.” We share with them the success stories going viral on social media or the people with Down syndrome on the cover of magazines and say, “Have hope! People with Down syndrome can still do anything!” 

We take this ablistic idea that our value and worth are tied to what we can and can’t do, and we place it on our children with Down syndrome.

Please don’t hear what I am not saying. I am not saying we shouldn’t help our children be the best version of themselves. I believe this is good for all our kids regardless of a disability or not. And for some people with Down syndrome their best self is opening a restaurant, completing an Ironman or starring in a movie. The harm is found when we strive for our children with Down syndrome to be more like people without Down syndrome, convinced their worth is found in what they can or cannot do instead of recognizing their worth as intrinsic. 

For years, I have said I hope for a world where a parent with a new Down syndrome diagnosis is only congratulated and no longer consoled. Congratulated not because of what their child is capable of doing, but congratulated because their child is magic. Just as they are. Period. Full Stop. I want us to come alongside not just new parents, but all of those parents who are infected by ableism and say, “your kid is amazing because they are alive.” Isn’t that a relief? You don’t have to do anything more for your child to have value and worth. Your child doesn't have to be or do anything more to be so freaking worthy! 

I believe it’s time to shift all the energy we put into making our kids with Down syndrome more like people without Down syndrome, towards dismantling the ableism in our world and in our own lives. I think it would do us some good to spend less time sharing, reporting on and celebrating people with Down syndrome who are successful and more time sharing, reporting on and celebrating people with Down syndrome just because they are so freaking rad. Period.

Not rad because they can, but rad because they are. 

On a recent episode of The Lucky Few Podcast, we talked with a woman with Down syndrome named Karen Gaffney. Karen Gaffney is a legend. She’s accomplished so much in her life including being the first person with Down syndrome to swim the English Channel. Something Karen said while on the podcast was, “Down syndrome is a life meant to be lived.” Yes and amen. Down syndrome is not a life meant to be lived only if the person with Down syndrome can attend college, live independently, hold a job, read a book, write their name, drive a car, star in a movie, swim the English Channel etc. No! Down syndrome is a life meant to be lived. Period. Full stop. 

I want us to know about Karen Gaffney. Not because of all she has done, but because of who she is: a woman with Down syndrome living her best life. I want us to always have hope in the fact that our child is a person with Down syndrome who will be their best self. And we get to play a key role in that. So embrace who they are. May every breath they breathe be a testimony of their value and worth. 

Worth More Than A Disney Kid's Meal

This past weekend I took my family to Disneyland. During lunch we found a table in a very crowded, outdoor restaurant. As our family of five settled down at our table, pulling out water bottles, setting down backpacks and sanitizing our hands, I noticed a couple of adults with Down syndrome hovering around the tables right next to us waiting for them to open up. As a mother of two children with Down syndrome, I find myself trying to get into the business of people I see with Down syndrome out in the world and so I watched them, hoping they would sit as close to us as possible. As fate would have it, the table next to us opened up and not only did the two adults with Down syndrome sit nearby but so did their whole group. As they settled into their seats, I continued to be nosey and quickly realized the two people with Down syndrome were part of a larger group of adults with intellectual disabilities. I noticed that each person was wearing a lanyard around their neck with their name and other identifiable information on it. And while not everyone wore their disability on their face, from the way they all interacted with each other it was easy to see who the “helpers” or “staff” were, and I assumed the group of disabled individuals lived together in a group home.

The man sitting closest to me said “hey” and stuck out his fist. As I bumped fists with him I noticed the lanyard he was wearing said his name was Willie. He told me it was his first time at Disneyland and that he didn’t live in California. The woman sitting next to him chimed in and said, “Yeah, we don’t live here but we live in the same house. We all live in the same house.” Thus confirming my assumption. As I ate my lunch I overheard some conversations between a staff member and Willie which did not sit well with me. There was something about the whole observation I found to be sad. Macy happened to be sitting right next to Willie and when the staff worker brought out a kid meal for Willie, a large, grown man, I cringed and thought, this will not be Macy’s future! 

…

This morning after Josh came home from dropping Macy off at school, he met me in the kitchen and said, “I know the living skills class is not the ideal situation, but she’s doing well in it and seems to be so much happier.” 

Then I thought about Willie and my stomach dropped a bit.

The thing is, Josh is not wrong. Macy is doing well in the living skills class she is in, and she is happier there. Still, the situation with Macy, similar to the one with Willie, has so much happening below the surface that I say, without hesitation, is harmful. When I saw Macy sitting next to Willie, I thought about how our society is completely content with putting the Willies and Macys of this world in separate spaces. How it has been totally accepted and embraced by our society that it is best for a person with an intellectual disability to be in a separate special education class and how that sets them down a path towards separate work programs, separate church programs, and seperate dance classes until a person with an intellectual disability finds themselves with little to no autonomy, eating a kids meal at Disneyland. And that’s if they even have a chance at life at all. 

I don’t know if I want to scream, cry or throw things. 

…

The day before meeting Willie, a full-grown man eating a kid’s meal at Disneyland, we had an important IEP for Macy. An IEP where we officially went from a fully inclusive educational setting to a living skills class. Today when I was going over the IEP, all 35 pages of it, I noticed this statement on page 29:

“The team carefully considered any potential harmful effects that may result from the recommended placement and services. The team determined the potential benefits outweigh potential harmful effects, and this is an appropriate program in the least restrictive environment for Macyn.”

After reading this in the IEP, I reached out to the team to let them know I did not agree with these statements. During the IEP we went over present levels, progress towards goals, new goals, assessment outcomes and current placement. We checked the boxes and filled in the 35 pages of pre-slotted columns and dropdown menus. But we did not carefully consider the potential harmful effects that may result when we place humans like Macy into a separate program at school. We did not talk about how harmful it is for Macy to be physically separated from her peers - or more accurately - how harmful it is for her peers to be physically separated from her. We did not look at how harmful it is that our school systems are built upon a foundation of ableism and how disabled people are still viewed as “less than.” We did not take time to discuss how harmful it is when these separate spaces in our school make it difficult for non-disabled peers to be in relationships with their disabled peers, which further communicates this lie that disabled people are “less than.” We did not look at the harmful way so many special education programs are set up, a way in which competence and ability for the student with the disability is not assumed. We did not look at how harmful it is for our collective humanity when we decide it is okay to gather up people with intellectual disabilities and separate them. 

Here’s the thing, in the short term, the potential benefits for Macy in a separate living skills class does outweigh the potential harmful effects. But we can’t stop the conversation there. When we do, we ignore the fact that we are agreeing to a living skills class because any other option would require a continued fight with a system which has already made up their mind about students like Macy. A fight causing continued emotional and mental trauma for Josh, Macy and me. And when we fail to look at the bigger picture and at the same time communicate that we see no potential harmful effects with the restrictive placement being offered, we are agreeing with a narrative in which disabled people continue to be othered and further separated.  

…

There was a time in my life, even during my years as a special education teacher, when I interacted with the Willies and Macys of the world and I believed myself to be superior to them. I would never say that out loud, in fact I couldn’t really recognize it about myself. But I definitely approached my relationship with disabled people believing I had more to offer them than they had to offer me. It was subtle, and it was toxic. I know this isn’t true for everyone but considering how accepting we are of the way disabled people are grouped and separated, even to the point we expect it, makes me believe it’s safe to say it’s true for most. 

The point I find to be most ironic is that Macy, my daughter with Down syndrome, has taught me more about what matters in life than anyone else. And I believe if I had the privilege to be in a friendship with Willie he would have too. But it couldn’t happen until I could see the full humanity in them. It couldn’t happen until I could see the harmful ideologies in the narrative I had believed for most of my life and then admit I was wrong and apologize. And it sure couldn't have happened until I committed to making space for them to fully be who they are everywhere they chose to be. And it sure as heck isn’t happening for any of our kids as long as they are being separated from one another at schools. I have a feeling, if given the voice, the honor and the choice Willie would have chosen to be sitting next to me at that table in Disneyland eating an adult pasta with a side of tots, and I hope one day he gets to.

The Down Syndrome Narrative is Shifting, but in the right direction?

Down Syndrome Awareness Month 

I walked in the room where my 13 year old daughter with Down syndrome was looking at a book full of family photos. The sun was starting to set, its last rays sneaking through the slit in the living room curtain illuminating her face, as though the day coming to a close was making an announcement, “Here she is, and she is magic!” 

The whole ordinary, nothing-special scene felt anything but that as the sight of my daughter there on the couch took my breath away. I made my way over to where she was sitting and asked to join her. The magic of this mundane moment continued to expand as together we looked at photos of her as a baby. We pointed to her wild pigtails and commented on her fashionable outfits. Before getting up to go make dinner, I leaned in, kissed her on her illuminated head and said, “I’m so lucky to love you” to which she responded by saying “stop mom!” and pulling away. Teenagers! 

Looking at those photos of Macyn as a baby reminded me, how for a minute, I was so frightened and sad to know I’d be the mother of a child with Down syndrome. Thirteen years ago, upon learning we would have a daughter with Down syndrome, I had a blurry at best idea of what it might be like to love and raise a child with that diagnosis. I can see now how much of that understanding was way off base being served to me by a society steeped in ableism. 

Then a baby was placed in my arms and the whole narrative shifted. Within minutes of knowing Macyn I knew I was so dang lucky to get to love a child with Down syndrome. Right around the time Macyn came home social media was making its way into the world. So I joined in, starting an Instagram account and sharing our life with a child with Down syndrome, using the hashtag #TheLuckyFew because I noticed how few of us had a loved one with Down syndrome, and those of us who did felt so very lucky. As social media continued to grow the Down syndrome community began to connect, expand and evolve at a rapid rate. The phrase “The Lucky Few” was growing as well, becoming synonymous with Down syndrome, shifting the Down syndrome narrative by attaching the idea of “lucky” to the diagnosis. 

The phrase and ideas around “The Lucky Few” as introduced through social media is just one push towards shifting the Down syndrome narrative. Hundreds of people have taken to Instagram and Facebook shouting the worth of people with Down syndrome. Thanks to social media and the internet we are all one click or swipe away from learning about people with Down syndrome going to college, owning their own businesses, lobbying on The Hill, giving a TED talk, running marathons, and even completing a full Iron Man. We know people with Down syndrome can live independently, hold a full time job, get married and have children. In addition, over the past years we have seen people with Down syndrome represented in marketing campaigns for major brands all over the world, on the covers of high fashion magazines, and starring in primetime television shows and major motion pictures. 

The new narrative being shaped around what it means to live with Down syndrome is a far cry from thirty years ago when a parent having a child with a Down syndrome diagnosis was told they may never know their name and encouraged to institutionalize them. Today parents with a new diagnosis now have voices in their ears telling them “your child can do anything!” Clearly there is a narrative shift taking place. 

Yet I fear, if we are not careful, we will shift in the wrong direction. 

Here is what I see happening: As we celebrate that people with Down syndrome can do everything people without Down syndrome can do, we are communicating, even if inadvertently, that people with Down syndrome who are more like people without Down syndrome are the best kind of people with Down syndrome. To view Down syndrome in this way, to be more accepting of people with Down syndrome because of all the ways they are living a life like people without Down syndrome, is to fall victim to the ableism embraced by a society that has continually questioned the value and worth of people with Down syndrome. 

Friends, there is not a best way to have Down syndrome. 

My daughter Macyn, sitting on our sofa looking at old pictures, has many of the characteristics commonly found in a person with Down syndrome. She has hypotonia, or low muscle tone, which makes many fine motor, gross motor and speech skills difficult for her. She also has an intellectual disability which makes learning certain skills, especially academics, extremely challenging. At 13 years old she is not writing yet except for her name and a few simple words, she is reading at a Pre-K level, struggling with simple single digit addition, and she needs assistance with some of her personal care. Her differences in her speech and ability to understand and respond to social cues makes it difficult for her to develop relationships. She is not going to be the kid with Down syndrome highlighted on the news or the viral video because of the “amazing” things she can do or has accomplished. 

Macyn has Down syndrome. Every cell in her body has an extra 21st chromosome. You cannot separate Down syndrome from Macyn. The way she perceives and interacts with the world and everything in it is affected by the fact she has Down syndrome. This means Macyn is different. And of all the life lessons she has taught me in the past 13 years, learning to notice, embrace and celebrate our differences is near the top of the list. To hope for her to be more like people without Down syndrome would be to hope for her to not be her.

She is who she is, and she is magic.

When I reflect on the advances taking place for people with Down syndrome in such a short amount of time I find it spectacular. Life changing, really. I’m so very thankful to be raising a child with Down syndrome in this day and age. And when I reflect on what both the Down syndrome community and society at large have decided to highlight when it comes to people with Down syndrome I find it ironic. Ironic because also on the list of life lessons my daughter and other’s with Down syndrome have taught me is how to embrace humans because they are human, not because of what they can or cannot do. When I opened my heart to my daughter with Down syndrome, I opened my heart to a radical love that says, “you, exactly as you are, you are enough.” 

In a world full of joy squelching comparison, toxic positivity and constant discontentment, to see and believe that I am enough just as I am, and so is my kid, my neighbor, the person who appears to be so very different than me, is the kind of narrative shift Down syndrome has invited me to be a part of. A narrative shift we are all invited to embrace when we embrace a person with Down syndrome. I would argue it’s the kind of narrative shift we all crave. The kind that builds up our collective humanity rather than tears it apart. Yet this shift in the narrative loses its power when we strive to make our kids more like people without Down syndrome and allow our society to convince us that there is a best kind of Down syndrome to have.   

So this Down syndrome awareness month, let’s definitely continue to shout the worth of people with Down syndrome who are doing extraordinary things, and let’s also be sure to shout the worth of people with Down syndrome doing ordinary things. Let’s notice the magic our kids contain just by showing up in this world just as they are.

Let’s snuggle up on the sofa next to our loved one with Down syndrome and celebrate who they are, exactly as they are. Because they are magic!  

A glimpse into the heart, the why and the work of this New York Times Bestselling Author.

Join me for a (very vulnerable)  trip down memory lane: 

By the time I reached 4th grade I knew I wanted to be a children’s book author. Something else I knew in 4th grade was there was a social system in play that all school going children feel victim to. A social order if you will, labeling school age children as “popular”, “geek”, “goodie-goodie”, “jock” or “loner” to name a few. Once labeled these kids would be organized into groups and their social order was pretty much decided upon until reaching high school graduation. Occasionally, between middle school and high school or during summer break a person could decide to undergo some kind of dramatic change; dye their hair, get a piercing, lose or gain a bunch of weight, start smoking, change their style, develop boobs, etc. and show up at the start of a school year different enough to find their way into another, more desirable social group...most often the popular group. Not only have we all lived through this but watch any television show or movie featuring characters attending school and you can watch it play out in all its drama. 

When I entered 4th grade I found myself as the least popular girl in the popular group. For me, it was a brutal role to be assigned. I spent pretty much all of 4th-8th grade questioning if I was enough and feeling dissatisfied with who I was and who I was becoming. Okay, l’ll be honest, I spent all of 4th grade through today questioning if I am enough, feeling dissatisfied with who I am and who I am becoming. Which is why a few months ago, I started going to therapy for the first time. I had always believed therapy would be good for me but it took two published books with my third on the way (my first children’s book!) and being a social media influencer in the summer of 2020 (if you know, you know) for the push I needed to make the call and set up my first session. 

During this first session I told my therapist I needed some help navigating my insecurities within my role on social media, my place in the Down syndrome community, and as an author, especially with my first children’s book coming out. I shared with her that I always felt like I wasn’t enough. Like even now in all the aforementioned spaces I felt like the least popular kid in the popular group. To help me go deeper my therapist had me close my eyes and think back to one of my first memories of being hurt by others...my childhood wound. As I let my mind go back I quickly landed on a memory I had pushed aside, not realizing the power it had in my life…

 I was in 5th grade at recess with my group of friends. We were all sitting on the upper basketball court when one of the girls yelled out “D.N.H” and everyone but myself and one other person knew what that meant because they all began to run. Feeling stupid because I didn’t know what was going on, and not wanting to be left out, I ran with them. When they finally stopped and I caught up, some of the girls gave each other strange looks and then yelled out again, “D.N.H.” and ran. The second time this happened I stayed back feeling confused and hurt. Shortly thereafter the bell rang to go back to class. Through a series of whispers and note passing I soon found out that “D.N.H.” stood for “Ditch Nerd Herd”. These girls, most of whom had been my friends since preschool, had made a decision that I was not cool enough to be in their group and created a plan to leave me out. 

As I shared this with my therapist I began to weep. I was surprised that what I had always considered a small incident, which took place 30 years ago, could bring up such a strong physical reaction. It was an old wound which had never been healed and I wept. Through tears I went on to share how while this group of girls continued to be my “friends” and 6th grade went on with less social trauma, by the time I was in 7th grade I was full on bullied by some older girls who had befriended the same girls who had made up “D.N.H.” I spent most of 7th grade afraid to go to school, hiding in a teacher’s classroom at lunch, until one day the main older girl who had been threatening me walked up to me and declared “I decided you’re cool after all.” And that was that. 

Except it didn’t just end for me. A deep wound had been created and would continue to have me questioning my status, worth and identity to this day. Thank you Jesus for professional therapy.

For the past five years as I’ve stepped into the role of author, speaker, influencer, and Down syndrome advocate I’ve continued to question my skill set, my role, my worth. I’m certain I like people more than they like me. I leave social settings wondering if I was too much or not enough. I watch as my friends become more sought after authors, get invited to be keynote speakers, win advocacy awards or attend girls' weekends which I was not invited to. I find myself feeling like the least popular girl in the popular group. And I wonder what I have to do, how I have to change in order to get “in”? I wonder what’s wrong with me, what is so different about me that these spaces I want to be in don’t want me there. For years I’ve felt hurt and insecure and for years I have said nothing all the while thinking, “Heather, you are an adult in her 30’s with so many people who love and support you. Why are you acting like a middle school child? Why do you care so much? Why can’t you focus on what you have going for you?” Then one day after sharing all of this with my therapist she said to me, “...because you are functioning from your middle school child wounds. Of course you feel this way.” 

Over the past few months as I’ve been navigating all of this with my therapist I have also been working on launching my very first children’s book...my 4th grade dream coming true. As my therapist has helped me find the tools to enter into this book launch with more awareness of and grace for my middle school self, she has pointed out how the career path I’ve chosen, one in which I shout the worth of people who are left out and use my gifts and talents to create spaces where everyone can belong, is also birthed from this childhood wound. 

Whoa!

The hurting and broken 4th grade Heather who dreamed of being a children’s book author always felt like she was too different to fit in. This same very wounded girl would grow up to write a children’s book teaching kids to celebrate and embrace their Different. The hurting and broken places also became places of beauty, creativity and growth. A connection I had not made until very recently. That same book, written by the same girl who continually wonders if she’s good enough or worthy enough made the New York Times Bestseller list. 

Whoa! 

And here’s the thing, while I am celebrating this accomplishment, beyond thrilled and humbled to my core, being a New York Times Bestselling author is not a magic wand. I am still very much in therapy and still very much processing and healing and I have a lot of work to do and a long way to go. 

As I write this I am in tears. Tears of joy and grief, of healing and hurt. I am still a bit shocked to know I am a New York Times Bestselling author and overwhelmed with gratitude. Mostly, I am thrilled to know a book with a message about showing up bravely just as we are and embracing and celebrating the differences in ourselves and others in the world, is making its way into the hands of kids just like me. A message I hope will one day create a whole new social order, one void of “popular” and “geek” and full of people celebrating and embracing the Different in themselves and those around them because Different is a great thing to be!  

ANNOUNCEMENT! ANNOUNCEMENT! ANNOUNCEMENT!

I wrote another book. It comes out in June. It is a children’s book. And today I get to share the cover!

Since I was in elementary school I dreamed of writing children’s books. When my kids entered my life I began searching for children’s books which told their story. I longed for beautifully illustrated and spectacularly written books about adoption, Down syndrome, race...about all the things that made our family different. As the years have gone on and I have had the honor of raising my three children who have often been seen as different in many of the spaces they occupy, I have rediscovered that I too have felt Different many times in life. And I recognized that this feeling of Different often felt bad. As it goes here at The Lucky Few, we are in the business of shifting narratives and the truth about being different is we all are. In fact, the Different in each of us is not bad, it is great! This narrative shift is still at work in my life. Even as an adult and I know that I want my kids and every kid ever to know that the Different they see in themselves and in others really is great. That Different is a great thing to be!

So I wrote a book for my kids...for all the kids, and it’s called: 
Different - A Great Thing to Be!

And today for the first time ever, I get to share it with you. I mean! Can you even? Look at that girl. 

Yes it is Macy!

I had the honor of working with the talented Sarah Mensinga on illustrations and she blew me away. Through conversations and collaboration she got into my head and heart and created a freaking masterpiece that could not be more perfectly paired with the words I wrote. I cannot wait for you to hold this book in your hands and flip through its pages. It is stunning. 

As always your love and support as we continue to make this a world where everyone belongs, means more to me than I could ever express.

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If you want to make sure this book is in your hands the second it hits bookshelves then be sure to pre-order TODAY! Available now at the following retailers…

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ABOUT DIFFERENT–A GREAT THING TO BE!

This joyful rhyming book encourages children to value the “different” in all people, leading the way to a kinder world in which the differences in all of us are celebrated and embraced.

Macy is a girl who’s a lot like you and me, but she’s also quite different, which is a great thing to be. With kindness, grace, and bravery, Macy finds her place in the world, bringing beauty and laughter wherever she goes and leading others to find delight in the unique design of every person.

Children are naturally aware of the differences they encounter in everyday life and relationships. They just need to be given tools to understand and appreciate what makes us “different,” permission to ask questions about it, and eyes to see and celebrate it in themselves as well as in those around them.

Why learning, forgiveness and grace are so important in our adoption story.

“I wanna take my baby and run.” 

This was my thinking when I entered the world of adoption a little more than thirteen years ago. There was SO MUCH I was unaware of. So much I needed to learn and understand. And the truth is, there is SO MUCH more learning to be done. 

When I entered the adoption space it was by my own choosing. I entered the only way I knew how, as an adoptive parent. I had a glamorous view of adoption at first. Thinking, “won’t this be grand?” Trying to control the situation and paying a lot of money to a private agency because I wanted a healthy infant who looked like my husband and me in some way. 

As the story goes, we ended up adopting our eldest daughter Macyn who has Down syndrome. She came home with a list of serious health issues that we were told may mean “she will live to be five, maybe as old as eight.” A baby girl who had an adoption plan created for her solely based on the fact that she had Down syndrome. 

She rocked our world and changed the trajectory of our lives forever. But the details of that are for another day (also found in my first book The Lucky Few). One year after she came home we got together with her birth parents and biological older sister. Then another year after that, we met the majority of her extended family at a birthday party they threw for her. This opened up my mind and heart to birth families and the importance of a relationship with a birth family if it is possible. 

So much about what I believed adoption to be when I thought, “I want to take my baby and run!”, was challenged as I opened up my ears and my heart to other players in the adoption narrative.

For example; I used to think Macy being my daughter was plan ‘A’. Now I can recognize that it was always plan ‘B’ at best because I believe in a God who wants families to be intact, healthy and whole. I do not believe God would create brokenness for my child, for his/her birth mom and every single person involved in the adoption as the first and best plan. 

Another example; I knew adoption could be challenging but it took me some years to recognize the very important fact that every adoption is birthed from tragedy. There is no way around it. The starting point of an adoption is tragic, complex, brokenness.

As we enter National Adoption Awareness Month I reflect back on how there was so much I was not aware of when we started the adoption process. So much I wish someone would have shared with me. And not because I would have changed our adoption story. The fact I get to raise my three children and be their mom is the honor of my life. But so that I could have had a healthy understanding of adoption and all its players from the start. Here is what I wish I knew:

Adoption is not a story about me. 

Let me say that again to all the adoptive and hopeful adoptive parents:Adoption is not a story about us. We are not the star, we are not the hero, we should not hold the most power. 

Adoption is a three part story, or a million part story held by three main characters:

The birthmom; 
The adoptee;
The adoptive parents. 
Adoption is a triad. 

And each person in the triad plays an important role. But no one told me this. So that’s why I’m sharing this with you. 

In the United States, and especially in the Church community in the United States a narrative of the adoptive family as hero has been painted in bold bright colors. It is a narrative that I believe has missed the heartbeat and foundation of an adoption story. It is a narrative that allows white families to adopt children of color and raise them in a white community and deny the harm this can cause. It is a narrative that has silenced or even at times villainized the birthmom. It is a narrative that has used the idea of redemption and love to gaslight the very real feelings that go along with the true narrative each person in the triad is living out.

While I have found all of what I share here to be true of an adoption journey, I’d be remiss to also share: there is real love and real redemption taking place in the lives of those living out an adoption story. True love and real redemption which are given the nuance that adoption requires. Love and redemption with unlimited amounts of space for processing, learning, forgiveness and grace. 

Today I share with you as a person who finds herself smack dab in the middle of processing, learning, forgiveness and grace. A person who is walking daily in the redemption and love adoption has ushered me towards. 

A redemption and love which has allowed me to go from an adoptive mom who thought “I want to take my baby and run!”, to a mother who knows this baby is not “mine” alone, a mother with a fuller understanding of the importance and complexities of my role in my children’s lives, and a mother who is dedicated to building up a foundation of processing, learning, forgiveness, grace, truth and love for the children I have the honor to raise. 

It is my hope this month that awareness around adoption expands in my own life and in yours. 

Forgiveness + grace my friends,
Heather

What I Want You to be Aware of During Down Syndrome Awareness Month

“What’s the most difficult thing about raising a child with Down syndrome?” 

As an author, speaker, and shouter of worth in the Down syndrome space I’ve been asked this question hundreds of times. And over the years my answer has changed. Allow me to expand:

I became the mother of a child with Down syndrome 12 years ago when I adopted my eldest daughter Macyn, and then again almost seven years ago when I adopted my youngest son August. As it goes with most mothers, everyday has been full of magic, messes, nonstop learning and growing, with my kids at the heart of all activity. 

As the years have gone on and I’ve learned from and alongside my kids with Down syndrome and so many more people with Down syndrome who I’ve met along the way, the lessons have been many and my ideas and understanding around what it means to be an advocate and ally for those who have Down syndrome and others with disabilities have shifted or straight up changed. For example (and this is a big one): While I’ve never felt sorry for people who have Down syndrome I have definitely thought of myself as superior to people with Down syndrome in the sense that I believed I had more to offer them than they had to offer me. It’s embarrassing to admit, but it is true. 

Before having children with Down syndrome and meaningful relationships with people who have Down syndrome I can understand why I would have felt this way. You see, while I never had any one person or organization in my life straight up teach me people without Down syndrome have more to offer the world and that people with Down syndrome are “less than,” the fact is we live in a world built around systems that, without using words (or sometimes with!) have planted this  ideology and allowed it to take root, spring up and grow like life-sucking weeds. 

With all this said, let’s go back to the question I get asked all the time as an example of this kind of deep rooted ideology: “What is the most difficult thing about having a child with Down syndrome?” 

The main issue I have with this question is the applied assumption that Down syndrome = difficult. This question focuses on the negative ideology attached to a Down syndrome diagnosis and leaves out systems, relationships, societal norms, our own human inadequacies, all of which I have found to be the main culprits to why raising a child with Down syndrome can be difficult. Let me unpack this a little bit as well as take it a step further, and to do so I want to talk about the most profound thing I have learned and continue to learn day after day after day by being the mother of children with Down syndrome:

You, with the breath in your lungs and the heart beating in your chest are worthy of a good life.

You, just as you are, exactly where you are, have great worth.

You are enough.

Period. Full stop. 

What my children with Down syndrome have and continue to teach me and remind me of is that there is inherent value and goodness in every person and as soon as we stop using the measurement tools laid out for us by a society in which a certain kind of person is more valuable than another, the sooner we can understand and live this out.

And the kicker here: the people who need this message the most are the very same people who are asking me, “What is the most difficult thing about raising a child with Down syndrome?” Because my kids with Down syndrome, my friends with Down syndrome, they don’t need to be reminded of their worth and value and yours and mine. They see it. They point it out. They present to the world as they are and want you to do the same. No pretense, just honesty and love. They have been the ones to teach me to see the worth and goodness in others as well as myself. Learning this simple yet profound lesson through the lives of my children with Down syndrome has significantly and completely shifted the way I view myself, others, and the world. 

As I’ve learned and grown and shifted I can see how harmful it was for people with Down syndrome as well as myself and everyone around me when I viewed myself as superior to people with Down syndrome. Now I am able to see just how wrong that way of thinking was and how much I have to learn not just from people with Down syndrome but from all kinds of different people. 

So you want to know what the most difficult thing about raising a child with Down syndrome is? It’s you, and me, and mindsets of superiority, and comparison, and systems which continue to separate and segregate trying to brainwash us into believing that one kind of person is better than another kind of person. The most difficult thing about raising a child with Down syndrome has never been Down syndrome. 

As we find ourselves in the middle of Down syndrome awareness month 2020 complete with a side of world wide pandemic and political blarg (is there a better ‘G’ rated descriptor?) happening all around us I have a challenge: may we become aware of people with Down syndrome and take a lesson from them. Let’s ask ourselves who do we believe we are better than? Whose life do we believe is less valuable than ours? And then after facing what is likely to be a bit of a harsh reality let’s make a commitment to: one, show up as we are. No pretense, no comparison, no self-doubt; and two, to see the inherent worth and goodness which can be found in every human.

This my friends is the most important thing I can bring awareness to during Down syndrome awareness month.