On Taking A Girl With Down Syndrome To The Prom

Every spring, I see posts and articles like this one, about a handsome quarterback who invites a girl with special needs to be his date to the prom. Messages threads on multiple postings of this story, and others like it, always share a common theme:

“This boy restores my faith in humanity.”
“A true hero. His parents must be so proud.”
“His parents raised him right.”
“What a kind and wonderful thing this boy did to give her a night she will never forget.”

Yes, it is wonderful to see “typical” kids including kids with special needs in activities and it’s true that this boy…and the hundreds like him who ask someone with special needs to proms and homecomings…is clearly a kind and compassionate friend. This particular story isn’t just about the boy asking the girl on a date to a big event; it involves a friendship they have shared since fourth grade and the promise he made to her when they were ten-years-old that they would go to the prom together. So he gets multiple brownie points for being a man of his word. But I personally don’t think he’s a hero or that he extended an extraordinary act of kindness to a girl.

I think he’s a guy who wanted to ask a girl he likes and values to go to the prom with him. Period.

Why do we think he has done something heroic and selfless by asking his friend to share this right-of-passage, milestone moment with him? Why wouldn’t he want to ask someone who has been his friend for seven years to attend the big event? Maybe he asked her simply because he thought she would be the most fun date he could possibly have.

This boy might have been concerned that asking a “typical” girl to the prom – maybe the Homecoming Queen or a cheerleader – could mean that he’d spend the evening waiting on her to emerge from the bathroom, where she would spend most of the party gossiping with her friends. Or he might have worried that other potential dates would go to the dance, get totally wasted and puke all over his car and her expensive dress, which happens with alarming regularity at the high school parties in my community. Maybe he didn’t want to share his prom with a girl who would look at the other kids with judgement or critique the others girls’ dresses or hairdos. Why is it hard to believe that he chose to ask her – and she chose to say yes – because they like each other?

What if he asked her because he knew that she was the girl would treat the evening with the respect it deserves? What if he knew that she was the girl who would cherish the evening, say “yes” every time he asked her to dance and savor everything about being there with him? What if he knew that she was the girl who would make him feel like a prince if he treated her like a princess for one special evening?

To believe the notion that kids who are friends with kids who have special needs are somehow more noble or heroic than other teens is to think that there’s something wrong with being friends with kids who are “different.” He took her to the prom because he felt sorry for her or he took her because he wanted to make himself look good to others or he took her to the prom because no one else would.

Excuse me, but look at her…she’s gorgeous! Why can’t we imagine that he took her to the prom because he thinks she cute? And dare I say it…why is is hard to imagine that a typical teen might have a romantic interest in a teen with special needs? I loved the episode of Glee that featured Becky, the cheerleader with Down syndrome, and her typical boyfriend because when some of Becky’s friends questioned his motives for wanting to date her, he indignantly told them that (paraphrase) he liked her, plain and simple.

down syndrome prom date

What I see in these pictures is a beautiful young woman and a handsome young man who are about to have a great night. They look happy to be together and maybe a little anxious to dispense with the photo shoot and get on with the party. They look like they are proud to be chosen by each other for this special event.

When we make his choice to take her to the prom evidence of his extraordinary heroism, we diminish her. And we diminish all girls every time we tell them, in subtle and overt ways, that they are not complete unless they have a boyfriend, or unless their boyfriend gives them a corsage more elaborate than the other girls, or unless they get the most elaborate “promposal” of the year.

Hey, I’ve got a great idea! Let’s all agree to stop diminishing all girls – special needs or not…in any way…starting right now…Got it? Thanks!

So, he’s not a hero. But he is a handsome young fella who asked a beautiful gal to the prom. They are young people who have sustained a meaningful relationship since elementary school and who, I imagine, will continue to sustain their relationship for many years to come. And I bet that at their prom, they created memories they will both treasure for the rest of their lives.

And on a personal note, these two get my vote for the most adorable prom couple of the year!

Anna and Nathan, Prom 2015

Anna and Nathan, Prom 2015

 

What Happened When A Radio Talk Show Host Used The “R” Word On Air

This post contains graphically offensive racial and ethnic slurs that are not a part of my vocabulary…I am using them to illustrate a point. I am deeply offended by the use of words that disparage or diminish any group of people.

Words…what power they have.

The words we choose to use can open a dialogue or shut one down; they can make a friend or an enemy; they can forge a bond or create a divide.

This morning, local radio station owner Michael St. John was hosting his daily morning talk show when he unintentionally ignited a firestorm by his repeated use of the “R” word. I didn’t hear it myself but one of the parents in my program did, and she called me. She was hurt and outraged. She said, “You are our voice…please speak for us” so I called the station to see if Mr. St. John would speak with me. We talked for nearly an hour and I think both of us came away feeling positive.

On-air, Michael relayed the story of two separate events that happened to him yesterday that involved two people with special needs, one who worked in a grocery store and the other at a fast food restaurant. In both instances, the person with special needs was unable to perform the job duties they had been assigned. In both instances, everyone involved had become frustrated – the people with special needs and the customers they were tasked with serving. Michael explained to me that he was trying to ask a general question…is there some sort of governmental mandate that is requiring businesses to hire people with special needs even if they aren’t qualified for the jobs?

I should mention here that Michael’s radio station is a conservative talk station, which helped me make sense of his “big government interference” theory. I should also mention that there is no governmental mandate to hire people with special needs and that I strongly encourage businesses to give jobs to people with special needs when they can. We have two employees with special needs who make valuable contributions to our organization each day.

In both of these instances, the person with special needs had difficulty making appropriate change for a purchase. Michael wondered why they were put in the position of operating the cash register if they weren’t skilled enough to do so, which is a valid question. Personally, I think the inability of some fast food workers to make change has more to do with our failing school system and our minimum wage than it does with having special needs but that’s a political ball of worms that I don’t care to open in my blog.

People didn’t hear Michael’s question or understand his point because all they heard was his choice of words…retardedretardretarded afflictions…and his repeated use of “them” and “those people.”

When I asked him about his use of these words, he was adamant in his intention that he used these words to describe the diagnosis of the person and did not mean to cast aspersions on them. And I was stunned to hear that Michael actually has a step-daughter with an intellectual disability. Turns out, Michael is not offended by the “R” word as a parent and did not seem to be aware that its use is no longer deemed appropriate.

I wondered how a person – especially one who has a family member with a disability – could be so oblivious to the fact that the “R” word is no longer acceptable but I reminded myself that he lives in a small community in North Alabama, which could explain a lot. Rednecks can be slow to catch onto trends.

Ouch…that stings because I, too am a redneck from North Alabama.

When I tried to explain to him that the “R” word is inflammatory and negative, he was a bit defensive in his stance that you can’t eliminate a word from the dictionary just because some people find it offensive.

Here is one thing Michael said to me (paraphrased):

People with retarded afflictions shouldn’t be put in jobs that don’t match their skill set.

So I asked him to substitute other offensive words in this sentence and see if he thought it would be acceptable to say them live on the radio, like this:

Faggots/niggers/chinks/kikes/dagos/wet backs/rag heads/crackers shouldn’t be put in jobs that don’t match their skill set.

I think a “lightbulb” went off for Michael.

The surprising thing was that the longer we talked, the more I liked Michael, even though I was primed to take his head off. He truly didn’t intend to offend people with special needs or their families. He truly intended to simply ask what he thinks is a valid question. He is truly grateful for the job his step-daughter has and knows that she takes pride in having a job she can do independently and well. He truly wants other people with special needs to have that same employment experience- he doesn’t want them to be placed in jobs that are inappropriate for them because he truly hated to see two people with special needs becoming frustrated when they were unable to be successful in their assigned tasks.

Michael said to me, “When a door slams in your face, a window will open and I think this happened today so that you and I would have this conversation.” He’s promised to issue an apology/clarification on air tomorrow and has invited me to be his guest on his show in September, an invitation I’m happy to accept.

I may not agree with his politics or enjoy conservative talk radio but he’s not a bad guy…he just made very poor word choices. I do the same thing every day when I drop “F” bombs around. There are certainly people who tune me out or become outraged with me because I say “fuck,” even if they agree with my message. So a lightbulb went off for me, too.

Although I’m sure I will continue to drop “F” bombs when I believe they are appropriate and while “fuck” may be offensive to some people, it is an adjective or a verb, not a noun used to disparage someone.

Which brings me back around to words and their power. We have advocacy groups telling us every day that certain words aren’t acceptable, from the NAACP to the LGBTQ. So I am adding my voice to the chorus of voices that are trying to tell our society that we are all more alike than we are different…and not just in matters of race, ethnicity or sexual preference.

It’s not okay to call anyone names, people.

People with special needs are people…they are not just a diagnosis or a stereotype. They are people with feelings and they deserve to be respected, by us and by our words.

The Secret about Parents of Kids with Special Needs

 

Alisa and Anna Chilton

Alisa and Anna

I follow a lot of blogs. One of my favorites is Special Needs Mom, by a gifted writer named Suzanne Perryman. She posted an entry on April 14, 2013, that pops back up in newsfeeds occassionally and during the past week, I’ve noticed that several of the moms of students in my program have reposted it. Click here to read the post.

As I re-read this post, I realized that I know a secret about parents of kids with special needs, a secret they won’t tell you because they probably don’t even realize it …

The secret is that parents whose kids have special needs are brave.

What else do you call a person who has faced their worst fear and emerged changed for the better? In the past seven years, I’ve met hundreds of parents and I’ve only encountered one who was bitter, a young mom who’s daughter has cerebral palsy and who told me that her daughter was too disabled … more disabled than any other child and couldn’t possibly be part of my program. The rest of the parents I’ve met are … well, they are just brave. And brave people rarely tout their bravery.

They didn’t start out that way.

They started out on the road to parenthood just like I did … with a vision that did not include hospitals, therapists, resource classrooms. They were a couple with a shared dream of creating that perfect family that we all want. Maybe they imagined their child would be a great athlete or a great artist or a great engineer. While they were expecting, they imagined all those life events their child would experience … playdates, school plays, college, a wedding. For some of them, that imagining came to a halt during pregnancy, for others the end of the dreams didn’t come until later.

But at some point, life said to the parents I know:

“Sorry, you don’t get that dream. You better get busy trying to imagine a different one.”

And so that’s what they did.

 

Connor and Brian Furber

Connor and Brian

 

They’ve taken the disappointment, the fear, the anger that they must have felt and have turned the other cheek. They refuse to let anything negative shape the rest of their lives or cast a shadow on the lives their children will have. They were dealt a blow that must have laid them flat on their backs, but they’ve gotten back up again, put a smile back on their faces and they’ve re-imagined the future without rancor and without regret.

There must be times when the heartbreak returns. Maybe a girlfriend tells them about her daughter, who made the cheerleading squad or maybe their buddy tells them about teaching his son to drive – and there it is … that pain, that regret, that feeling of, “Yeah, that’s what I thought I’d be doing.”

I think bravery is doing something, even when you don’t want to or are afraid and never allowing yourself to become resentful about it. Which is exactly what the parents I know do.

I’ve experienced a miniscule taste of what it might be like. Austin began to lose touch with his classmates around 9th grade and for the rest of his high school years, we were caught up in the drama of drug addiction. A few weeks ago, I ran into the mom of one of his kindergarten classmates and was startled when she told me that her daughter had graduated from college back in May.

“Wait a minute,” I thought to myself. “If Austin hadn’t spent six years using drugs, he’d be graduating from college now?” For a brief time, I let myself think about all that we missed … prom, high school graduation, fraternities and campus visits.

And as I thought about those lost dreams I’d had for Austin, I wondered if I would have turned out like that one parent I met who was bitter that her child had cerebral palsy or if I would have been brave enough to embrace an unexpected and uninvited path.

Once I said to a parent, “I don’t know how you do it,” not realizing that this would be offensive to her. Parenting her child was not some onerous task, some hardship she had to endure … parenting her child was a gift in life.

Was she like that to start with, before she knew her child would have a disability?

Or did having a child with a disability turn her into a resilient and brave woman who could accept that she was going to have to travel a road she never asked to travel?

 

Ben, Carly and Gina Bender

Ben, Carly and Gina

 

Some of the bravest parents I’ve met are ones whose adult children have disabilities … those parents who insisted on bringing their children home from the hospital back in the days when doctors told them not to.

One father told me that when his son was born, in 1960, the doctor said,

“Put him in an institution. You’ll visit him once a week at first, then every six weeks and before you know it, you’ll never even remember you had him.”

Those parents brought their children home when there were no resources, no therapists or early interventions, when their children were not even allowed to go to school. I know so many parents who have retired and still have their children living at home and imagine that they worry every single day about what will happen if their children outlive them. But that doesn’t stop them from fully embracing the path life placed them on, despite what they might have imagined one day so long ago.

All I know to say is … that’s what bravery looks like.

The next time you see a parent of child who has special needs, remember this secret they will never tell you … when you see them in the grocery store or at your school or at your church …

You are in the presence of a person who is truly brave.

And the next time you are disappointed in something or life hands you an unexpected twist, and take inspiration from their bravery.

A Brave Boy Named Bill

Me and Bill in January

Me and Bill in January

 

Last week, I mentioned a student who would miss our recital because he would be having surgery to remove a suspicious mass. The final diagnosis came today … that student, Bill, does have cancer but the doctors are sure they caught it early, say he only needs two rounds of chemo and are confident of a complete cure.

Hearing this news takes a little of the sting away … at least it will just be two treatments, at least he will recover completely. Thank you to all of you who reached out to me after the last post, expressing your support of our organization, our students, our volunteers and the families who have suffered tremendous losses this year.

I’ve been working on two other posts for this week – a recap of our gloriously amazing recital on Saturday afternoon and another on our “Next Step” in an attempt to improve special education in our community – and was feeling pressured to finish them because the week is getting away from me.

And then, Bill’s dad told me a story today that I asked his permission to share with you, so the other posts will have to wait because this story made everyone at Merrimack Hall smile and “ugly cry” at the same time.

Bill has been in Project UP for three years and is an exuberant, enthusiastic and fantastic dancer. He can shred a mean air guitar riff, is a great partner when you want to do the shag and has deftly portrayed characters as different as Huck Finn and Danny Zuko in productions and dance competitions. He is always smiling, has never met a stranger and a hug from Bill … well, a hug from Bill can make even the worst day suddenly become the best day ever.

Last fall, I asked the Project UP parents for their permission to do something that might be considered a little too “in your face.” Hayley and Melissa wanted the kids to do a dance to that great 80’s anthem by Twisted Sister, “We’re Not Gonna Take It.”

 

Project UP performing "We're Not Gonna Take It" at NRG Dance Project in Atlanta this fall

Project UP performing “We’re Not Gonna Take It” at NRG Dance Project in Atlanta this fall

 

In a brainstorming meeting, one of us – we can’t remember exactly who it was – came up with the idea of putting the kids in t-shirts with slogans about whatever their diagnosis is. We put it to a vote and the parents unanimously agreed with our idea. We found some of the slogans through a google search and parents suggested others … imagine 42 people, ranging in age from 13 to 35, sporting ‘80’s themed hair styles, headbands and leg warmers and proudly wearing fringed t-shirts that said:

You’d be happy too, if you had an extra chromosome.

I have an extra chromosome and I’m not afraid to use it.

Am I rocking this extra chromosome, or what?

The rainbow is also a spectrum.

I have autism and I am awesome.

Don’t dis my ability!

or my personal favorite…

Normal is a dryer setting.

The dance ends with a fierce air guitar solo by the guys, with the gals jamming behind them and on the final clash of the drums, all the dancers end in a pose with their right arms extended high in the air and their fingers in the universal symbol for “Rock on, dudes!”

Each time they performed this dance, audiences responded with a standing ovation, shouts of support and usually, a lot of tears. It’s become sort of our theme song now … yes, the folks in Project UP have disabilities but it doesn’t bother them … they’re not gonna take it anymore!

They’re not gonna take being discriminated against or left out or marginalized or bullied or made fun of or … you get the picture! The dance seemed to leave the dancers feeling more empowered each time they did it.

 

Bill and Haleigh after the NYCDA Competition performance in Nashville

Bill and Haleigh after the NYCDA Competition performance in Nashville

 

So, back to Bill and his surgery last Friday. His dad said that Bill became anxious during the pre-op procedures. The nurses that were prepping him for the surgery asked Bill if he had any favorite songs that they could all sing together to help him relax.

Bill’s parents explained the “We’re Not Gonna Take It” dance and as Bill laid on the gurney, everyone started singing it. Bill marked the dance moves as best he could … he’s a great dancer but it must have been hard to get his groove on when he was attached to monitors and IV’s and laying on his back … but he worked it out!

Once in the operating room, away from his loving parents, Bill got scared again … really scared. So, one nurse started singing, “We’re Not Gonna Take It” again. And then all the other nurses started singing too. And then the anesthesiologist joined in…and then the doctors joined in … and then other technicians in the room joined in until the entire operating room was singing.

 

 

Bill performing at the holiday show

Bill performing at the holiday show

 

And Bill relaxed. And as the anesthesia began to take effect, Bill raised his arm high in the air, fingers extended into the “Rock on, dude” position and he fell peacefully asleep.

Imagine that … an operating room full of focused and competent medical professionals who have specific protocols and stringent procedures to follow … singing Twisted Sister to a young man with Down syndrome. What compassion they showed for Bill by singing his favorite song to him.

And imagine Bill, scared and confused and alone but comforted by those doctors, nurses and technicians as they sang. Imagine how powerful Bill must have felt when he reached down deep into himself and called on his faith and his courage and his inner strength.

Imagine how he expressed his strength … by raising his arm in the air and saying, not with words but just with a gesture, “Bring it on … I can do this … I’m not afraid … rock on, dudes.”

Last week, I felt defeated by loss. Saturday’s recital left me newly inspired because of the accomplishments of our students. And today, I feel proud to know a young man named Bill, who conquered his fears … and who is going to kick cancer’s butt … because he is brave and strong and faithful.

Bill is a rock star and cancer … well, Bill’s not gonna take it!

 

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).