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.”
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.
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.