Down Syndrome … Just Like You

Darby and girls

Friday, March 21 is World Down Syndrome Day … a day set aside to raise awareness about Down syndrome and to celebrate our friends and loved ones who are born with this genetic condition. There are over 400,000 people in the U.S. who have Down syndrome and they deserve to be celebrated but more than that, they deserve to be accepted and understood. If the general public could understand one thing about Down syndrome, I wish it would be this … the only difference between “typical” people and people with Down syndrome is just one tiny chromosome.

For the past six years, I’ve spent a lot of time with people who have special needs like Down syndrome, autism spectrum disorders, cerebral palsy and many other diagnoses and conditions. The people with special needs who I know and love have taught me so many things and have changed my definition of “normal.” The over-arching thing they’ve taught me is that we all have special needs of one sort or another; we are all genetically predisposed to look a certain way, to behave a certain way, to learn a certain way. We each have our own unique brand of special needs … some people’s are just easier to recognize than others.

Two years ago at our summer camp, a seven-year-old girl with cerebral palsy (let’s call her Samantha – because I don’t have any students named Samantha) told our Artistic Director, Hayley Henderson, that she was “scared” of a girl in her class who has autism (let’s call her Alex, because I don’t have any female students named Alex). Samantha didn’t understand some of the ways Alex behaved and thought that Alex was being “mean” to her.

“You know how you have cerebral palsy and that keeps your legs from working the way they’re supposed to?” Hayley asked Samantha.

“Yes,” Samantha said. “But what does my cerebral palsy have to do with Alex acting weird and being mean to me?”

“Alex has a special need too, but it’s not one that you can see,” Hayley explained. “Your special need is in your legs but hers is in her brain and it affects the way she acts sometimes. She isn’t trying to be scary or weird and she doesn’t want you to think she’s mean. Her special need is called autism and it can make her act differently than you do sometimes. But besides that, she’s just like you.”

Samantha replied, “Okay, now I understand! I didn’t know people could have special needs in places besides their legs. I won’t be scared of her anymore … if she acts weird to me, I’ll know it’s because she has special needs!”

Debra and Samuel winking

Jen Greenstreet, founder of Just Like You Films, has produced three documentary short films featuring children with cancer, burns and Down syndrome. Each film delivers the message that these exceptional children are “just like you.” In honor of World Down Syndrome Day, please take the time to watch this 13-minute video. Maybe you’ll even have your children watch it! What if thousands of people all over the world watched this little film and began to realize that every one of us is “just like you?” What would happen if we all realized that everyone deserves to be accepted, just the way they are? I’d like to find out … wouldn’t you?

Condolences on the Birth of Your Baby

Before I started my program of arts education for people with special needs six years ago, I didn’t spend time with people with developmental or physical disabilities. As is the case with most things in life, if it doesn’t happen to us, we aren’t too interested in knowing about it, right?

Oprah says, “When you know better, you do better,” and now I know better. Getting to know people with special needs and their families has opened my eyes to the injustice and prejudice they face every day. I’ve heard stories that have made my blood boil, stories about children being left out … of everything, being marginalized and ignored, being told, “No” by schools and organizations, being told they can’t participate in activities or take advantage of opportunities.

My own outrage is what fuels my desire to make these children and their lives matter to people … outrage that a child is defined by his or her disability instead of by who he or she is and can become. I am going to tackle a lot of sensitive subjects in this blog in an attempt to raise awareness, open hearts and minds and hopefully, spread the messages of acceptance, forgiveness and love that I’ve learned from the people who teach me more than I could ever teach them.

But I’ve never heard a story that made my heart hurt more than this one …

When one of my students was born, her parents received sympathy cards … because she was born with Down syndrome.

Let me say that again … multiple people went to a store, searched for a greeting card that would convey their feelings about the birth of a baby with Down syndrome and consciously, intentionally chose cards that said, “I’m sorry for your loss,” and “I’m thinking of you during this time of sorrow.” What the hell is wrong with people? And two of the people who sent these sympathy cards were physicians, who ought to know better.

To be fair, maybe these people wanted the family to know they were thinking of them but didn’t know quite what to say. Maybe they meant to say, “I don’t know the right words but I’m here if you need me.” Maybe they thought the baby might die and bought the card to send “just in case” and then accidentally mailed it? Or maybe they are ignorant, uninformed, heartless assholes.

When I was in my 20s, two of my friends had children with Down syndrome, friends who didn’t live near me and whose children I haven’t gotten to know. I don’t remember what I said to each of them when I called to offer my congratulations and was told of the diagnosis, but I’m sure I didn’t offer my condolences. I think I said, “God gives special children to special parents,” which I’ve come to learn is not what parents want to hear but is at least positive, which is more than can be said of most of the comments they hear – from their friends, colleagues, even from doctors (the attitude of some medical professionals needs its own blog post to properly address). It’s only natural that when someone we know receives a diagnosis, we’re not sure what to say.

Receiving a diagnosis is scary, it’s unexpected (whether that diagnosis comes prenatally, at birth or later on) and let’s face it, it’s everyone’s worst fear. We all pray that our children will be born healthy, whole and perfect. We all want our babies to come into the world fully equipped with everything they need to succeed, excel, have happy and productive lives. When someone we care about receives the bullet we were lucky enough to dodge, it’s hard to know what to say.

But you don’t say, “I’m sorry for your loss.”

My husband Alan and I with some of the amazing kids in our Johnny Stallings Arts Program

My husband Alan and I with some of the amazing kids in our Johnny Stallings Arts Program

A child has been born, a beautiful baby who is exactly the way God made her, who came to his family in just the way he was meant to, and that is a miracle to celebrate … even if that child has a diagnosis that means their life won’t look exactly like everyone thought it would. We have to remember that parents of children with special needs prayed for a different outcome than the one they got and that their prayers quickly turned from “Let my baby be able to do everything I’ve dreamed for them,” to “Let my baby survive … and let me be the parent I wasn’t prepared to be.”

Gene Stallings, the legendary college football coach who led Alabama to a National Championship and who’s career included stints with the Dallas Cowboys, the St. Louis/Phoenix Cardinals and his own alma-mater, Texas A&M University, had a son born with Down syndrome in 1960. Johnny died in 2008, leaving behind a legacy equal to his father’s. Coach Stallings’ book, Another Season: A Coach’s Story of Raising an Exceptional Son is a moving tribute to Johnny’s life and the impact he made on the thousands of people who knew and loved him. When he came to Merrimack Hall in 2009 to help us raise money for our program, Coach Stallings shared many stories from his book. The one that made the greatest impact on me was this: Coach Stallings said that for the first few years of Johnny’s life, he prayed every day that God would change Johnny and then Coach Stallings realized that God wasn’t going to change Johnny … God had changed him.

The parents I know echo that sentiment, tell me that their lives are so much better because of what their child is teaching them about tolerance, patience and love. They tell me that they wouldn’t have their child any other way, that while they may have worries, fears and concerns about their children’s futures, they are blessed by them. And while they wouldn’t trade their children for anything, this was not something they wished for or hoped for and was, in fact, something they had prayed would not happen to them. But like Coach Stallings, their children have changed them … for the better.

What they needed to hear when their children were born was, “Congratulations! You are going to be an amazing parent! Your baby is beautiful and I love her just the way she is. Your journey may look different than mine but we are on the same road together, just trying to do our best to raise our children.”

The same parent who received the condolence cards received validation of his child’s worth from a complete stranger … a man he met in a parking lot and struck up a casual conversation with about their shared profession. When the conversation turned to their families, the parent explained that he had a six-week old daughter with Down syndrome. The stranger asked to see a picture and when he looked at it, he said, without hesitation and with genuine emotion, “She’s gorgeous.”

The parent wept tears of gratitude for the words of a stranger, words that confirmed his daughter’s right to be accepted, just the way she is.

Students in our Johnny Stallings Arts Program at their annual dance recital.

Students in our Johnny Stallings Arts Program at their annual dance recital.

What parents of children with special needs wish for every day – from their friends and neighbors, from organizations and churches, from school systems and from society at large – is that their children will be accepted, will be nurtured, will be included … just like yours and mine are.

When their children reach a milestone, they want us to celebrate it with them, even if our children reached that milestone a year ago. When their children have a birthday, they want us to come to the party. When their children are hurting, they want us to care. They do not want our stares or our rudely worded questions. They do not want us to tell them that their children can’t join in or be part of the things that our children do, can’t play on our ball teams or on our playgrounds or in our homes.

They need us to acknowledge that their children are every bit as valuable as every other child and can contribute wonderful things to the lives of others, if we will only let them.

And they most certainly do not need or want our sympathy or our condolences.

Advice for My Love Life

Katie (and her tiara) at work yesterday at Merrimack Hall.

Katie (and her tiara) at work yesterday at Merrimack Hall.

The people in our Johnny Stallings Arts Program have shared insights with me on lots of topics that have impacted my views on most everything in life but last week, Katie told me a story that offered an example of how I could improve my love life. Katie has a long-term, on-again-off-again, innocent, sweet and age-appropriate relationship with Noah but when I listened to the story of what happened at a recent dance, I realized that I could take her situation, grow it up to an adult level and probably add some spice back into my romantic life with Alan (If my adult children are reading this, they probably just threw up).

Katie told me the story while she was at work, wearing a tiara, as she normally does. You see, Katie is a princess. I’ve heard her introduce herself to people like this: “Hi! I Katie. I graduate from high school. I work at Merrimack Hall. I a songwriter. And I a princess.” Spend enough time around Katie and you’ll begin to realize that being a princess is a state of mind. Once, she told me that I was a princess, too.

“Don’t you think I’m a little old to be a princess?” I asked. “How about I’m the queen.”

“Debra,” she said, “You never too old to be a princess.”

Noah and Katie before prom

Noah and Katie before prom

So, her story was that she and Noah were on a date at a dance and things started going south when Katie told Noah she wanted to slow dance and he told her he didn’t.

“Why he not slow dance?” she asked me. “I look beautiful. I look perfect. I work so hard…my hair, my purse, my red dress. I a princess.”

If I followed the story correctly, Noah refused to slow dance because he only wanted to hip-hop dance, which I interpreted to mean that he didn’t want to do the mushy stuff but instead wanted to show off his killer moves. Katie, all dolled up and ready for romance, wanted to slow dance and to be treated like the princess she is.

“What did you do when he told you ‘No’?” I asked.

“I say ‘No slow dance, no kiss. I really want to kiss Noah…so I mad.”

“What happened next?” I was dying to know how this turned out because I’ve seen Katie when she’s mad and my advice…avoid making a princess mad at all costs!

“He say he want to kiss too. I say ‘Then slow dance.’ We slow dance. Then we kiss. On the cheek. Then I happy.”

That’s where the light bulb went off for me. They both wanted to kiss … on the cheek … but Noah’s way of getting there was to strut his stuff while Katie’s way was to slow dance and be treated like a princess. I had to admit that even though I think I’m pretty capable, even though I’m independent and in charge and don’t need a knight in shining armor to rescue me, I would like to be treated like a princess, every now and then.

Me and Katie after the holiday show.

Me and Katie after the holiday show.

If I had known Katie back in the ‘80’s, I wouldn’t have had to read, Men Are From Mars, Women Are From … some other planet that I can’t remember, because she nailed the difference in the sexes with one simple story. Men and women want the same thing…the kiss…but we have very different ways of getting it. Katie was baffled that all of her hard work and preparation for the dance – the hair, the nails, the red dress – didn’t get her the result she wanted. And Noah was probably confused when Katie wasn’t won over by his strutting around. Of course, the real moral to the story is that the only way the disagreement was resolved was that Noah had to do things Katie’s way. “You’re right” – the two most important words a man can ever say to a woman. Noah conceded to Katie’s wishes and everyone lived happily ever after…for now.

I’m going to try to adopt Katie’s mindset because she’s right … a girl is never too old to be a princess.The next time I want to be romantic with Alan, I’m going to get all dolled up and ask him to slow dance with me. I’m going to let him strut around and show off but then I’m going to ask him to tell me I’m a princess. If things go according to plan, we will both end up happy in the end (my children just threw up again).

Stop The Word

Anna G & Anna C

Anna G & Anna C

About two years ago, I made a frustrating mistake, nothing big but one that would create extra work for me. In the moment, I said something out loud, without thinking. Thankfully, there was only one person around to hear my shocking word choice.

“I can’t believe I just did that,” I said. “I’m such a retard.”

The expression on my team member’s face is what made me realize what I had said, as she looked at me with disgust and disappointment. And then, my mind went immediately to the precious faces of the people I love so much and their families. I was instantly ashamed. How could I, of all people, have used that word? And even though I didn’t say it with malice, how hurt would they all be if they knew I had used it?

I was born in 1960 and have lived in Alabama all my life. The “N” word wasn’t part of my family’s vocabulary but I heard it, all the time, all around me. The first time I remember understanding that the “N” word was horrible and hurtful was when I was nine and someone I knew used the word in front of an African-American woman who was a guest in our home. I will never forget the look on the woman’s face … the look of humiliation and silent outrage and hurt. Even though I was only a child and was being raised in the Deep South during the height of the Civil Rights Movement, I grasped the implications of that word because I saw the effect it had on the face of a woman I knew.

The “R” word is every bit as hateful and as hurtful as the “n” word, is every bit as derogatory and pejorative as any ethnic or racial slur people invoke. The definition of “retarded” is: less advanced in mental, physical or social development than is usual for one’s age. The “R” word used to be a medical diagnosis but today, the medical community uses “intellectual disability” and the “R” word has become a convenient slang, something people use to describe others or actions in a deprecatory way. This needs to stop … like yesterday.

When our mothers told us, “Sticks and stones can break your bones but words can never hurt you,” they were just trying to make us feel better. We all know that many times, words hurt even more than punches. You’re so gay; you’re such a Jew; how ghetto is that; you’re so retarded … sure, they’re just words but when used in that context, they are words meant to imply inferiority and insult, words that are used with the intent to throw a punch more powerful than a fist.

Shauna painting in The Connection

Shauna painting in The Connection

Last week, I asked one of the girls in Project UP a question. She looked at me with panic as she frantically searched her mind for the answer. I gave her a hint and when she remembered it, her face was flooded with relief. Because she is intellectually disabled, it is difficult for her to process information as quickly as I can. She has to work ten times harder than I do just to answer a question … or write her name … or say the alphabet. This doesn’t make her dumb or stupid or inferior; it actually makes her smarter than me because she has adapted to her disability by finding other ways to cope with a world that is difficult for her to navigate. She is every bit as valuable, her feelings every bit as important as yours and mine. She told me once that she knows she has, “Something called Down syndrome” and that, “It takes me longer to learn things” but what she doesn’t know is that people use her diagnosis as a way to disparage or insult other people. I hope she never learns that.

One of our social events at The Connection

One of our social events at The Connection

We’ve come a long way with the “N” word…we’re making headway on the negative use of “gay” and “fag” and “homo” … we still have a long way to go with all the other ethnic and racial slurs we hear every day. It’s easy to use a word in a negative way to cast aspersions on a group if we don’t know anyone who belongs to that group but when we put a face with that word, it becomes personal. Before I knew people with special needs, I didn’t think about what it meant to use the “R” word but now that I know so many, I see a face when I hear that word … a child, an adult, a teenager, a parent, a brother, a sister…the faces of the people who would be hurt by the use of the word. Which makes my thoughtless use of the “R” word even worse.

Some members of Project UP got to meet Jane Lynch back in July when they performed at the National Dance Day Gala in Los Angeles. She was sitting on the front row of the theatre and even before the music ended, she started a standing ovation for Project UP that instantly spread throughout the theatre and lasted for nearly six minutes, which made everyone affiliated with Project UP become her biggest fans. Ms. Lynch and actress Lauren Potter (Becky on “Glee”) have a public service announcement that is part of the “Stop the ‘R’ Word” campaign, which makes us love her even more … take a look if you haven’t seen it before:

March 3 is the first day of “Spread The Word To End The Word Week.” Click here to view their website, which is full of information, like suggestions for how to stop the use of the “R” word, powerful videos and testimonials that are enlightening and informative. The site asks us to take a pledge: I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities. I’ve taken the pledge and I hope you will too.

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

Darby’s Passing

Yesterday at 1:30 p.m., heaven gained a new angel.

Darby at her first recital

Darby at her first recital

I’m devastated by the loss of precious Darby Jones, one of the “Original Posse” in The Johnny Stallings Arts Program. I thought I had wrapped my head around the thought of losing her but of course, when it really happened I wasn’t prepared at all. Today, when I pulled into the parking lot of Merrimack Hall, I immediately broke down…knowing that I will never again see Darby dance on our stage hit me like a brick wall. I thought of all the times I’ve seen her pull into the parking lot with her mom, beaming from ear to ear because she was so excited to get to dance class or to perform in a show. I remembered back to our very first class on October 8, 2008. Darby was bald and in the midst of a round of treatment for her third bout with leukemia. Weak and pale, she was determined to get through those first few months of class, no matter how exhausted or sick she was.

Merrimack Hall became one of her favorite places…the place where she lived out her dreams of being a star. We have presented many luminous performers on the stage at Merrimack Hall – people who have won Emmys, Tonys and Oscars. But none of them could hold a candle to seeing Darby perform on stage. I will miss her so much.

Most of my concern today has been for her teammates. There hasn’t been a day that has gone by since Darby relapsed last May that someone from the Project UP gang hasn’t talked about her. Just yesterday, one of the kids said, “Hey, you know what? My friend Darby isn’t going to die or anything. She’s just in the hospital for a long time.” I have agonized over how the kids would deal with the loss of their friend and teammate, knowing that many of our students might not have a frame of reference for the finality of death. I shouldn’t have worried.

The "Original Posse" - Our first ten students in 2009

The “Original Posse” – Our first nine students in 2009

The Project UP kids told me things today like, “Did you know Darby is in heaven now? I bet she’s dancing up there.” Or, “Darby has died but she will always be in our hearts, won’t she?” Or the best one, “Could you be quiet for a minute? I’m trying to talk to Darby right now.” One girl said, “I’m going to miss her a lot but she’ll be here every time we dance,” as she pointed to her own  heart. Once again, I underestimated our students and their capacity to grasp what’s really important in life.

Darby at Camp Merrimack

Darby at Camp Merrimack

And so we will grieve the loss of a beautiful child, a child who taught us so much. The lessons I learned from Darby were to accept everyone just the way they are; to start and end every day with a smile; to enjoy every single thing you do every single day; to say I love you to the ones you love…a million times a day. Darby showed me what courage looks like, not just as she battled cancer but every time she came to dance class. Darby showed me what joy looks like, every time she smiled. When I looked at Darby, it was like getting a little glimpse of what God must look like. I ache for her parents as they face the staggering loss of their only child. I will remind myself that Darby was a gift in my life and that even though five years wasn’t enough, I was blessed to know her for as long as I did. And every time our students take the stage, I know Darby will be with me, right here in my heart.