State Dance Champions

Last March, we chartered a bus and traveled to Bessemer, where Project UP's junior and senior companies participated in a dance competition. They were the only competitors who had special needs - or should I say they were the only competitors who had obvious special needs, since we've already established, thanks to Abbey, that everyone has special needs.

Abbey playing drums during summer camp

At any rate, there were a couple hundred dance studios from across the state who entered in this competition, where they were being judged on everything from the originality of their choreography to their costumes and of course, on their execution, training and precision as they performed their numbers. There was an astounding amount of young talent in the large auditorium where the competition was held, and hundreds of people there to support the competitors.

Project UP's junior company entered a jazz dance number. There were 8 girls in the piece, aged 13-15, several of them new to our programs and not experienced in performing in front of a large audience. The veterans of the group kept the newcomers calm as they prepared to perform. But there was one glitch that had us all worried. Because of the set up of the auditorium, there was no place for Hayley to stand so that she could cue and direct the kids. Normally, Hayley finds a place in front of the kids so that she can offer them direction, remind them of upcoming changes in formation and, in general, give them the support they need to remember their dances. But at this huge competition, there was no way for her to be positioned anywhere that would allow the kids to see her. They were on their own - completely - for the first time ever.

Hayley helping the kids on stage during rehearsals

They took the stage with tentative grins on their faces. By the second 8-count, we could tell they had found their rhythm and were "killing it." As they progressed through the choreography, we could see their confidence take over and saw them do the routine to perfection, never missing a cue or a step. All of us were blown away by their performance. A spontaneous standing ovation broke out in the audience, with the loudest cheering I've ever heard at one of these competitions - and believe me, people cheer loudly for their kids at these events. But the applause for our kids was the loudest, most genuine and most inspired cheering I've ever experienced.

As the kids exited the stage, Anna G. collapsed in her mothers arms, sobbing inconsolably. We all feared something had happened, like an injury, because of the way Anna G. was crying. We all kept asking her what was wrong and when she finally could breathe enough to tell us what was the matter, here's what she said: "I'm just so happy. We did it."

Anna C. Katie and Anna G. clowning around

Of course, every one of us broke down at that moment too. Anna G. stated something profound in those two little sentences. She was just so happy that she had conquered a challenge, risen to the occasion and for the first time ever, performed a dance number with no assistance from her teacher. She was proud of herself, proud of her team and relieved that they had accomplished something so huge. That was a moment that I will never forget.

Together, the Junior and Senior Companies performed another number and received the same support and enthusiasm from the audience. And then it was time for the awards.

At a dance competition, all the participants are called on stage and the MC announces the winners in each of the categories. I was proud enough just to see our kids sitting on stage, surrounded by typical dancers - "normal" kids who are able to dance without the barriers our kids have to overcome. And then the unthinkable happened. Both of our dance numbers received platinum awards - the highest award given based on the judges exacting scores. But even better than that, the Junior Company's dance won first place overall in its division, beating out several other "typical" dance studios to claim the top prize.

Usually, when a winner's name is called at a dance competition, there is polite applause from the other competitors on stage. These are, after all, competitions, and dancers are highly competitive folks! But when Project UP's Junior Company was named the overall winner, the other dancers on stage applauded with an enthusiasm they would normally reserve for their own dance studios. They extended high-fives and fist-pumps to our kids and some of them even stood up, to join the audience in the standing ovation that the audience was giving. Alan and I were so emotional, we couldn't even look at each other or we would have gone into what Oprah calls "The Ugly Cry!"

After the competition, we went as a group to a restaurant in Bessemer, the oldest restaurant in Jefferson County with an extensive menu, white tablecloths and in general, is a lovely dining experience. They have private banquet rooms and we had reserved one for our group of about 60 kids, parents and volunteers. I saw a look of trepidation on the head waitress' face when she saw us - all these people, with 20+ kids with special needs can appear to be a tall order to fill! The kids all wanted to sit at their own table, without their parents, and even I was a bit nervous at how that would go. Many of our kids are either non-verbal or have speech impediments that make it difficult to understand what they are saying. The kids refused to let their parents help them order and only reluctantly agreed to allow me to help when the waitress came to their table. Each child politely said what they wanted to eat, thanked the waitress for taking their orders and patiently waited their turn. When all the orders were placed, I left them alone at their table, watching to see if any antics or problems might develop.

Now, I've taken a lot of teenagers out to a lot of restaurants in my day - I have two kids of my own and was always the mom who would end up taking everyone's kids out to eat after events. I have never seen a more well-behaved group of young people in my life. Sure, there was some loud laughter, some bathroom humor, some friendly teasing of each other. But not one kid got up from their seat, not one kid failed to put their napkins in their laps or use their utensils (most of my kid's friends would tear into their food like neanderthals when eating out, would cause problems for the wait staff, make impossible and rude demands and, in general, act like teenagers when I took them out to eat).

When we left, Alan approached the head waitress and thanked her for her patience with our large group. She looked at him, with tears streaming down her cheeks, and said, "No, we thank you. We have been blessed more than you will ever know by meeting these kids and waiting on them today."

Our kids beat the odds every day. They overcome challenges, step over hurdles, charge through barriers everywhere they go. What it takes for them to navigate the world, what resources they have to draw from just to do things the rest of us take for granted, is inspiring and amazing to me. And every time someone else meets them, sees them perform, or has an interaction with them, hearts and minds are changed and stereotypes are erased. To play a role in facilitating that is the greatest blessing I have ever received.

So, here's to champions everywhere! True champions are people who work hard to accomplish a goal, dedicate themselves to perfecting their skills, accept victory with humility and defeat without bitterness. And I've never met any greater champions than the kids in Project UP!

First Place Overall Winners at Alabama State Dance Championships, March 2012

The Opposite of Bullying

Darby is 13-years old and has lived through more challenges in her short life than most of us will ever encounter. Born with Down syndrome, Darby had open-heart surgery as an infant and has survived not one, not two, but three bouts with leukemia. When I first met Darby in October 2008, she was fragile, pale and bald, suffering through the worst of a year-long round of chemo in her two-year treatment protocol. Sometimes, she had to come to dance class wearing a surgical mask, as her immune system was so compromised that she was susceptible to any bug or virus in the air. Many times, she would have to sit down during class, as she tired easily. Her mom, Valerie, said that most times that year, she would barely be buckled into the car after class before she was asleep, exhausted from the exertion of being in a dance class. But no matter how bad she felt, how many times she had thrown up that day, how awful her pain was, Darby insisted each week that Valerie bring her to Merrimack Hall for her Dance Your Dreams! class. Valerie said that being at Merrimack Hall was the only bright spot for Darby during that very dark year.

Darby in 2010

Darby is what the experts would call high functioning, but what I would call incredible. She performs at grade level academically, is involved in every extracurricular activity her school will allow her to join and is even a drummer in the marching band. She has taken piano lessons, choral lessons, theatre classes, is a member of her school's thespian club and loves to go to Camp Smile-A-Mile, for children with cancer, each summer. But her favorite activity out of them all is coming to Merrimack Hall because she loves to sing and dance. She advanced up to Project UP last year and loves all the additional performance opportunities she has as a member of our upper level program.

Darby relaxing at camp

Despite her accomplishments, Darby could be a prime target for bullying. She is naive and trusting, a bit behind the curve socially (she hasn't noticed boys yet, much to her father's relief and still likes to play with dolls and with children younger than she is), and she has Down syndrome. While there are many places where she is accepted for who she is, like her church and Merrimack Hall, being in a large public school has put her in the same arena with kids who might not be so kind. We all know the hateful words she may be exposed to someday, those hurtful labels that she might be given, those names she might be called. We all know there may come a time when Darby realizes that she is "different" from her typical peers, when she isn't included in someone's birthday party or when she isn't invited to the prom. If and when that day comes, I know Darby will be able to handle it with the same sort of dignity and courage that she has handled having cancer. I know this because for now, instead of bullying her, her peers have singled her out for recognition and have celebrated her "differentness" in a remarkable way.

You see, Darby has been elected to represent her class in the Homecoming Court tomorrow night! That time-honored tradition of selecting the most popular girls in the school as representatives at the biggest football game of the season has been adjusted slightly by the kids in Darby's grade. Tomorrow night, Darby's dad will be proudly strutting down the football field, with his daughter on his arm, a mum pinned on her collar. Tomorrow night, Darby's grade will be represented not by the smartest girl in the class, or the prettiest girl in the class. Tomorrow night, Darby's grade will be represented by the bravest, kindest and most deserving girl in her grade. And to think that average 13-year-olds had the wisdom and compassion to select Darby to represent them gives me hope that there are enough young kids out there who are willing to stand up for others, who are willing to advocate for those who might not be able to advocate for themselves. There are kids out there who see Darby for who she is, not for what she's diagnosed with. And now I don't know who's more courageous - Darby or her classmates.

Darby dancing with me at The Connection

When the day comes for Darby when someone bullies her, puts her down, leaves her out, mocks or ridicules her, I know that she will be able to remember what she feels tomorrow night, that she will remember that when she was 13, the kids in her grade found her to be the most deserving and the coolest girl in their class. She will be able to draw strength and courage from this honor for years to come and will always know that for once in her life, she was recognized for being "special" for something other than having Down syndrome. She will always be classified as having special needs, but tomorrow night, she will just be special. I know Darby, and I know the message that she is special will resonate with her for years to come and will make a huge difference in her self-esteem and in how she thinks of herself as she advances into high school.

Darby in the school band

We've been hearing so much about bullying during National Anti-Bullying Month, so many ugly stories of people of all ages who are humiliated and hurt because of their appearance, sexual orientation, religious convictions, political affiliations, economic status and more. Today, I wanted to share this story of a group of "typical" kids lifting up a "special" kid, honoring her and paying tribute to her because they like her and admire her. I'd love to hear more stories like this one from you - please post your comment on this blog so that we can push back against bullies by sharing examples of anti-bullies!

I will close with a video shot this summer, where Darby is explaining her Beads of Courage with Carolyn (age 18, autism) and Leah, a staff member. You will be able to see for yourself what an unbelievable girl Darby is. And Carolyn, our new staff member at Merrimack Hall, has her own accomplishments to brag about - she will be representing the United States as an ice skater at the Special Olympics in Seoul, Korea, in February 2013!

CHATS WITH THE CHAIRMAN - Bullies Aren't Welcome Anywhere

My friend, Abbey is 12-years-old, in 7th grade and has cerebral palsy. I wrote about Abbey a few posts back when I was writing about labels and why we have to attach them to children with special needs. As Abbey so astutely pointed out to me, everyone has special needs of one sort or another - some people's are just more obvious at first glance than other people's are. But recently, Abbey shared with me what it's like to be bullied because of her disability and I found her words to be incredibly powerful - and they made me incredibly angry. This video clip will show you, in her own words, some of the things Abbey has to endure. Click on the image left to watch!

I'm sure watching this video will make your blood boil and your heart break, imagining what Abbey has to put up with, imagining her coming home from school to cry. I hope it will also make you admire Abbey for her courage and self-confidence because she is able to let most of these bullies roll off her back. Her mother has taught her that she is so much more than her diagnosis and luckily, she has many other kids and adults who recognize her bravery and integrity. Abbey is able to advocate for herself in many ways, as she is articulate and one of the most compassionate people I've ever met - of any age!

But what happens to those kids who aren't able to stand up for themselves, like Abbey is? What about those kids who can't communicate well enough to defend themselves? Or besides children with special needs, what about those kids who are routinely bullied because of how they dress, how they look, how well they do or don't do in school, their sexual orientation, their religious beliefs? How did it become so commonplace for our children to have to endure mistreatment and what can we do to stop it?

I wonder if we have become such a litigious society that too many people are afraid to stand up for victims of bullying because they are afraid of legal implications if they do. Or if we have become so immune to the effects of bullying because there are so many ways a child - or an adult - can be bullied. There's cyber bullying, workplace bullying, schoolyard bullying. Are we becoming so cowardly that we are allowing the bullies to win? Are kids being told they can't stand up for themselves against bullies because our schools have a zero tolerance policy for violence so that a student can't even physically defend themselves?

To me, bullies are ignorant, plain and simple. They are ignorant about a lot of things, like people's differences, they obviously aren't tolerant and clearly don't have any confidence in themselves. But I think the biggest thing they are ignorant of is their own feelings and emotions. If a school yard bully or an office bully had the emotional maturity to be cognizant of how their words and actions feel, they wouldn't do such cruel and hurtful things. How to go about educating these ignorant bullies is where the problem lies.

Children who bully other children are perhaps mistreated at home. Maybe they don't have loving adults in their lives who teach them right from wrong. Maybe they aren't being raised with any sort of spiritual grounding, any sort of religion that teaches them about loving our neighbors as we love ourselves. To a certain extent, children can't be held completely accountable for their actions. Which is where we, as a society, have to step in and set standards of acceptable behavior to one another for children to emulate.

Abbey and I spent an afternoon together about a year ago. I picked her up at her house and took her to a children's nail salon, where she got a manicure, pedicure and a haircut, then we went to the mall where she wanted to "Build A Bear" and ended our day with lunch at a fun-themed restaurant. I enjoyed every minute with Abbey, loved her hilarious running commentary on everything we were doing - that kid has quite a sense of humor! But by the third stop on our trip, my back was hurting and my arms were starting to ache. Because each stop along the way involved getting the wheelchair out of the back of the car, lifting Abbey from her seat (and she weighed about 60 pounds at the time), getting her situated in the chair and then repeating these actions when we got back into the car. I suddenly understood why so many of the parents of the kids in my programs wore back support bands, why so many of them had back problems.

When we were at the mall, it suddenly dawned on me that whoever thinks that stores in malls are wheelchair accessible is crazy because we bumped into every end wrack and display we came across. The aisles were not wide enough to accommodate even a child's wheelchair. Several people, including children, spoke to us in the bear store, admiring the kitten Abbey created and greeting us warmly as we passed. But when we made our final stop at the restaurant and were waiting in line to be seated, a big, ugly, wretched looking woman began to stare at us- in disgust. A grown woman, who, I might add, was ill-groomed, smelled bad and looked even worse (okay, I might be exaggerating but wait until you hear the rest of the story!), stared down at Abbey in her wheelchair, not saying a word. Abbey smiled up at her, held out her kitten and said, "Would you like to see the kitten I just made?" The woman looked Abbey straight in the eyes....and turned her back on us.

The hostess at the restaurant and the other patrons waiting in line saw this and all of them began to chime in to Abbey, exclaiming over how cute her kitten was and what a good job she did in creating it. The hostess even skipped over the hideous woman to seat others behind her first. But none of that prevented Abbey from being completely aware of what had just happened - she had been judged and rejected by an adult, a grown woman who certainly should have known better. What'cha want to bet that that wicked witch raised a bully or two?

As a parent, I certainly don't want to be held responsible for every mistake my children might make. But I do feel I should be responsible for giving them the moral grounding to help them develop their own moral compass and the ability to feel compassion for others. As a society, we should all feel a responsibility to make up for cruelty and bullying when we see it happening, like the others did in the restaurant line. It can't take away the hurt from someone being bullied, but at least we can show them that everyone in the world doesn't stink.

And it wouldn't hurt if every parent had to spend an afternoon lugging a wheelchair or walker everywhere they go, seeing what it's like to have a child with special needs who is completely dependent on others for their mobility. Walk a mile in someone else's shoes and we're more likely to understand what their life is like on a daily basis. Why don't we all band together, like the people in the restaurant line, and acknowledge when we see someone being bullied - ignore the bully and extend compassion to the bullied? Why can't we all show those who bully that they aren't welcome here, in our schools, in our businesses, in our homes? Bullies do what they do because they are ignorant and because they can get away with it. The next time you see someone doing something cruel to another person, if you don't want to step in and get actively involved, at least turn your back to the bully and let them know that bullies aren't welcome around here.

Debra Jenkins, Chairman

CHATS WITH THE CHAIRMAN - Alan's Girlfriend

Amelia at her first Dance Your Dreams! class

Meet Amelia. She is currently 9-years-old, I think? I need to check her enrollment form to be sure - I know she’s been with our program for four years and was 6-years-old when she started, so I’m pretty sure she is about to turn 10-years-old - but I could be wrong. We have 40 children now in the 3-21 age group, who are active with us in our weekly arts education program, plus an additional 40 adults with disabilities - sometimes the details escape me.

When we met Amelia, Hayley and I were intimidated. Amelia was immobile at the time, she is non-verbal and she wears cochlear implants. While she appeared to be vigorously healthy, not frail like a few of our first students were, we didn’t know what we could teach her to do or how to go about teaching her without hurting her. She couldn’t speak, remember, so if we did some sort of stretch with her that was painful, how would we know we had hurt her if she couldn’t say “Oww!”? How would we be able to communicate what we wanted her to do if she couldn’t speak, couldn’t hear, and couldn’t do sign language because her fine motor skills are impaired by cerebral palsy?

Her mother, Brandy, is absolutely hands-down the most impressive young mom I’ve ever met, and that’s saying a lot given how much I admire and respect all of the parents in our programs. She has calmness about her; she radiates happiness and contentment every time I see her. When explaining Amelia’s limitations to us, she expressed no more concern than if she were telling us Amelia’s preference for what to have for snack; oh, but wait a minute, back then, we couldn’t even give Amelia a snack because the cerebral palsy made swallowing difficult for Amelia.

When Brandy explained this to us, four years ago, she told us that the swallowing issue caused Amelia to drool quite a bit and that if anyone found that distasteful, please let her know and she would send Amelia with a bib. Not only did it floor me that Brandy could tell us something about her child that is so devastating - she cannot swallow her food like the rest of us - but when she told us that, she was actually apologizing for the effect that had and was offering to correct it. She explained all of this to us in her sweet, upbeat voice with that big smile of hers that lights up her face - a smile framed by two adorable dimples - letting us know without saying it outright that she knows her daughter’s challenges might be hard for other people to handle, and that’s okay with Brandy. No judgment from her, no bitterness from her; nothing ever comes from Brandy but pure, unadulterated joy and love for life and for her precious family. When we met, four years ago, Amelia had a little brother; today, a little sister has joined the family - a precious little sprite who is always dressed in the cutest outfit and who loves to run around our lobby, playing games with the other siblings who are waiting in our lobby each week.

Now, when we started our first class way back in October 2008, my husband, Alan, had a hard time coming to watch the kids at first. Like many people, Alan’s first reaction was overwhelmingly emotional, and he literally couldn’t stay in the dance studio for more than a few minutes without his eyes welling with tears, his throat tightening, as the emotions swelled in his heart; emotions like admiration for the bravery and courage of the little children who were attempting to do things their little bodies couldn’t do and amazement at their achievements. Alan and I are both so humbled and grateful that we’ve been able to play a role in facilitating opportunities for our students and sometimes, we can both be overcome with pride that we’ve been able to do this and with regret that we can’t do more (or that we didn’t do this sooner and that we can’t do it bigger, etc.). Alan said he would get emotional for the same reasons you get emotional when you see someone accomplish a remarkable athletic feat or hear about an unbelievable act of bravery - because when you are presented with evidence of what truly amazing things human beings are able to achieve, it can be incredibly emotional.

Amelia after she performed at Panoply 2009

Because he didn’t want to have a complete breakdown in front of the parents, he would usually only stay in the dance studio for five minutes or so. But one day, he walked into the studio during that first class and Amelia twisted herself around in her wheelchair, reaching out for him. Alan approached her, leaned down and said, “Hi Amelia! How are you today?” She smiled at him - the biggest, slobberiest, most beautiful smile he had ever seen - and just like that, Alan was in love. Brandy told me later that she thinks the reason Amelia took to Alan so quickly and so forcefully was because she can hear the vibrations from men’s voices better than from women’s voices, but more than that, Brandy is convinced that Amelia knew without being told that Alan was the person responsible for making class available to her. Anyway, from that moment until today, when Amelia is in the building, she can recognize the tone of Alan’s voice as soon as he comes near her, breaks out into that beautiful smile and reaches out to him - only now, she can actually walk to him!

See, Amelia has moved out of her wheelchair to a walker, but when she’s at her dance class, we leave the walker against the wall - she doesn’t need it when she is wearing her leg braces and has her coach to support her. Amelia can walk now, something the doctors and therapists told Brandy would probably never happen. When she comes to Merrimack Hall, she heads straight for the elevator, pushes the button by herself, gets off in the dance studio, leaves her walker against the wall and goes straight to the ballet barre, where she knows her weekly lesson begins. Her favorite part of class is when they chasse, a particular ballet move, across the floor.

It was the chasse that was the first move Amelia did for us. Hayley happened to realize that if she faced Amelia and held her hands in front of her, as opposed to standing behind her and supporting her at the waist, Amelia could chasse - even though she couldn’t walk, she could execute the sideways steps of a chasse. When Amelia did this for the first time, every teenager and adult in the room screamed - out loud! Someone ran downstairs to get Brandy to come and watch. It was a pretty big day at Merrimack Hall, as we watched precious Amelia dance for the first time.

She’s getting bigger and stronger every day and walking is becoming easier for her. Brandy told me that Amelia’s physical therapist believes it is her involvement in our program that allowed Amelia to walk; I’m sure the extensive therapy she receives, plus the hands-on attention of her parents is the reason but her physical advances, but I bet our dance program hasn’t hurt! She loves to be on stage, smiling from ear-to-ear at the audience. She may not be able to hear their applause, but she can tell in the faces of those watching her that they approve of her performance. Alan loves all of our kids - he is especially close to the guys in Project UP - and knows some of our kids better than others simply because he’s not at Merrimack Hall every day. But his heart will always belong to Amelia. After all, she’s the one who taught him that there’s nothing to cry about when children are reaching their dreams.

Debra Jenkins, Chairman

A Film is in the Works

Billy Bob Thornton, the Academy© Award winning director, writer, actor and musician, has performed at Merrimack Hall with his band, The Boxmasters, two times in the past. Alan and I have become friends with Billy. He’s been to our home and we’ve been to his. He mentioned us in the acknowledgements section of his new book, "A Cave Full of Ghosts." One of my favorite memories from our Merrimack Hall journey is the night a large group of people gathered around the piano in my living room, with Teddy Andreadis (formerly with Guns N Roses and one of the top studio musicians in the world) playing “May the Circle Be Unbroken” while Billy sang lead and the rest of us followed along. Billy donated his artist fee back to our programs for kids with special needs the last time he performed in Huntsville and promised that the next time his schedule allows him to go on tour with his band, he will come back to Merrimack Hall and do a creative writing workshop with our students. And I plan to hold him to that promise!

Teddy Andreadis on piano, Billy Bob on vocals

Because of Billy, we came to the attention of some producers in Hollywood who approached us about 13 months ago, asking about our programs. After months of phone calls and discussions about doing everything from a reality series to a documentary short, they traveled to Huntsville last February to meet our students and a few of their parents. They left here committed making a full-length feature film, inspired by the students in Merrimack Hall’s programs. They told us, “We don’t just want to make a movie; we want to start a movement.” We said, “Yeah? So do we.”

Alan and I went to LA in May and the producers returned to Merrimack Hall in July. A script is being polished off, buzz is being generated and the producers are touting this film as a cross between “The Blind Side” and “Fame.” We are back in LA right now - I'm sitting in a lovely suite at The Four Seasons Hotel, getting ready for a big "dog and pony show," Hollywood style, that's being held tomorrow night at The W Hotel down the street. I feel sort of like Dorothy - I don't think I'm in Alabama anymore!

Elianna receiving direction from Producer Alex Barkaloff

It's all very exciting, to be sure. But whether a movie happens or not, we will keep on doing what we've been doing for the past four years, which is finding simple solutions to complex problems. When I was inspired to start The Johnny Stallings Arts Programs, I was told about all kinds of obstacles I'd have to overcome in order to provide performing arts education to children with special needs. I was told that I wasn't qualified, because I didn't have a background in special education or physical therapy; that parents wouldn't want the kind of program I was describing because parents of children with special needs don't want their children to be segregated from their typical peers; and I was flat out told that kids with special needs simply wouldn't be able to sing, or dance or act - and I was told that by the head of a large organization that provides services to children with special needs!

Sometimes, its a good idea to take your time, do your homework, think through an idea to be sure you are prepared to execute it properly. And sometimes, its a good idea to just do it! If I had listened to the naysayers, if I had questioned my qualifications, I would never have started our programs. I started with an idea - a good one - to provide arts education to children with special needs.  I decided that I had the resources and the will to start the program and that was enough for me. I knew how to teach dance, I hired an excellent teacher to work with me, I got a grant from The Jane K. Lowe Foundation and I recruited 10 children with special needs and 10 teenaged volunteers to help them. And just like that, we had a program.

Four years later, we have eight weekly classes that are currently serving over 80 children, teens and adults, with an equal number of volunteers working each week, plus we have The Connection for adults with disabilities and Camp Merrimack in the summer. All of our programs combined are serving in excess of 350 people each year, people who are routinely denied access to activities like the arts, social events and cultural activities. They come to Merrimack Hall in their wheelchairs, walkers, relying on canes; some of them are blind; some of them are deaf; many of them are non-verbal; some of them have Down syndrome or other developmental delays; some of them have autism; they are all what our society has defined as "less than." 

I've learned more in the past four years from those people who are thought of as "less than" than I've ever learned from anyone who is "normal." I've watched the people in our programs live in the moment, embrace whatever life has to offer them, exhibit the kind of bravery I could never replicate as they navigate the world, encounters barriers and obstacles every where they go. And I've learned to not over-think things, to go with your gut instinct and to sometimes, just do it!

I have no idea what will happen with this Hollywood thing. Maybe a full-length feature film will be produced and distributed to theaters across the country; maybe it will be up for Oscars, just like "The Blind Side;" or maybe nothing will evolve, maybe it will end up dead in the water like I'm told so many film projects do. Whatever happens, the process has helped us spread our message that we are all more alike than we are different. The parents and families of our program participants are proud that their loved ones have caught the interest of Hollywood producers. Merrimack Hall is all abuzz with excitement over the possibilities! But the main thing to remember is that all the excitement is due to one thing and one thing only - the inspirational message our students and their families give us every day. That message is that you take what you have in life and you make the best of it; you celebrate people's differences; you accept people for who they are, not for what they can or can't do.

At Merrimack Hall, we take our inspiration from the people we serve and we look for simple ways to make their lives more rich and full. I hope you will look around you to find issues that matter to you and that you will look for simple solutions to those issues. And once you come up with a good idea, one that you believe in and have the resources to implement, don't think about it too much - just do it! 

Our Love Birds

Katie and Noah are in love. She is eighteen and has Down syndrome and he’s seventeen and has autism. They go to school together, they carpool everywhere together and after three years, Katie was finally able to convince Noah to join her in Project UP. We’ve heard about Noah for years, as Katie tells us all about her romances when she comes to class each week. And she has quite a few love interests at any one given time! They include actual relationships with boys at school, crushes on boys she knows at school, crushes on boys at she doesn’t know at school, and major crushes on several celebrities but primarily Justin Beiber and Joe Jonas. Some days, Katie comes to class all wound up, in tears, and we’ve learned this usually means she has seen an article in her favorite “Teen Beat” magazine that has a picture of Justin or Joe kissing a girl. We call her our “Diva” because she loves the limelight, waves and blows kisses to the audience when she performs and in general, is …a diva! But Noah is her main man.

Katie and Noah dancing at The Connection 

The first thing Noah said to me when I met him this summer was that he loved Katie so much and that she was his future wife. Katie has decided that they will be married when they turn 25 (she told me that I will certainly be invited to the wedding but she’s not sure about anyone else who works at Merrimack Hall just yet) and they will live together in her parent’s house. She has already chosen her wedding gown - she told me its white and is covered with pink daisies - and Noah told me they will be going to Hollywood on their honeymoon so that they can go to Disneyland and “get our big break in the movies.” He wants to go to “that place where you put your hands in the cement and stay in a hotel.” Noah’s mother told me he is fascinated by hotels and loves the chance to stay in one - doesn’t matter to him if it’s a Motel 6 or the Ritz Carlton - if it’s a hotel, that’s all that’s important to Noah! At the first event for our new program, The Connection (which is social, cultural and recreational events for adults with special needs), we had a dance and of course, Katie and Noah came together. Katie had on a cute fedora and a feather boa, while Noah wore a huge sombrero. When I asked them what was up with the hats, Katie looked at me and said, “Duh! It’s a party!” Of course, how could I be so silly - if it’s a party, you gotta wear a hat!

Noah and his sombrero

Two weeks ago, I was out of town when Project UP had their class and I was told that Noah became quite agitated that I wasn’t in the office. He asked everyone on the staff where I was, when I was coming back, why in the world I had to go anywhere in the first place. His agitation was escalating and just when the staff was afraid he was going to have a complete come apart, it was time for class to start; all the kids made their way upstairs and Noah forgot about being upset that I wasn’t there.

Last week, I knew I needed to see Noah as soon as he walked in the door so that he would know I was back from my trip. I also knew that Katie was sick with a sinus infection and had missed school, and that her mother was sick with walking pneumonia. Noah walked in and, when he saw me, his screwed his face up tight. The tears started flowing and as he hugged, his tears turned to sobs - albeit, highly overly dramatic sobs. The conversation between Noah and me went like this (with him doing the over-the-top sobbing thing while he was talking):

“Where in the world were you last week?”

“I was in Greenville, South Carolina visiting my daughter.”

“Why? Why? That wasn’t necessary, was it?”

“Yes, Noah! I had to visit my daughter. She just moved there and I was helping her unpack her apartment.”

“That really doesn’t seem necessary to me. Couldn’t she do that by herself?”

“No, Noah, she couldn’t. She needed my help. But I’m back now! How has your week been?”

“Oh, Debra! I’m so upset. How long does this pneumonia illness last?”

“Noah, does Katie have pneumonia? I thought it was just her mom who has it.”

“No, Katie doesn’t have it yet, but I’m sure she will get it soon. And Miss Lori has it and its been forever and I miss my future wife.” He was really sobbing by this point.

“Noah, calm down! Katie probably won’t get pneumonia - she just has a sinus infection! And Miss Lori will be better very soon - she just has to take it easy of a few weeks.”

“And as if everything weren’t bad enough, I had to ride here with Miss Smith and I like Miss Smith and all, but she’s not Miss Lori and I really only like to ride with Miss Lori and I just know that this is going to go on for a really long time and (at this point, he walked to the wall, put his forehead against it and starting beating the wall with his fists. Other parents were standing around and I looked at all of them saying behind Noah’s back, “Hey, could somebody give me a hand here?” But it was so very amusing that they were all just watching and laughing, telling me I was on my own). I MISS MY FUTURE WIFE SO MUCH!”

“Noah, you don’t need to get yourself so upset. I bet Katie will be back in school in another day or two. And in the meantime, you are here with all your friends and we are going to have a fun class today, so why don’t you come in the lobby and let’s see who else is here.”

“I don’t care who’s here if Katie isn’t here. You don’t understand how this feels. I love Katie so much and I just know she’s going to die.”

As all the adults in the room struggled not to bust out laughing, Noah wailed his anguish over missing Katie and over the prospect of her death.

“I know she’s going to die because my grandmother died and my grandfather never was the same again. And I know that’s what happens. You get married, you are married for a really long time and then you die. I will be so upset when that happens to Katie.”

“Noah, you’ve got to get a grip on yourself. Now, look at me in the eyes, Do you know how many  years I’ve been married?”

“No.”

“I’ve been married 26 years. Do you think that’s a long time?”

“Yes, that’s a really long time.” 

“Do I look like I’m about to die?”

“No.”

“Okay, I’ve been married a really long time and I’ll probably be married many more years before I’ll be old enough to die. You and Katie will be married for years and years before either of you is old enough to die so you don’t need to worry about that right now. She’ll be back at school in a couple of days and you are late for class.”

“Now that I think about it, maybe you do look like you might be about to die. Twenty-six years really is a long time.”

“Well, Noah, I may not be looking too swift today, but I promise you I’m not about to die and neither is Katie. Now come on, let’s get up to class.”

He reluctantly agreed to follow his friend, Bill, up to class, but we could hear him muttering to himself as we went  up the stairs “I miss my future wife” over and over. Of course, all the adults laughed at me when I told them that if 26 years of marriage hasn’t killed me, nothing will! I told this story to Austin and Alan when I got home that night but after I told them, I felt bad. Noah’s anguish was real to him and I shouldn’t take it lightly. 

What I love about the teenagers in Project UP is their utter and complete honesty - with each other, with their parents and teachers, with us at Merrimack Hall. A “typical” 17-year-old boy wouldn’t want people to know how deeply in love he was, nor would he be willing to share his concern when his girlfriend was sick and missed school. Even though he might feel as in love as Noah does and even though he might worry when his girlfriend isn’t at school, a typical boy would never expose himself the way that Noah did.  Our typical teenagers have been taught how to play games with each other, how to do that “mating ritual” that hasn’t changed much since my day. The girls flirt, the boys respond; the girls say no but the boys beg for yes; the girls pressure for a definition of the relationship, the boys resist having limits put on them. 

Katie and Noah don’t do it that way. They love each other, plain and simple. They are dating each other, plain and simple. They don’t date other people….well, Katie flirts with lots of other people but for some reason Noah doesn’t get jealous. Noah tells Katie that she is the most beautiful girl in the world and I heard her reply by telling Noah that he was “the most special boy of my heart.” They don’t play games, they don’t manipulate each other, they don’t hurt each other. They just love each other and aren’t a bit uncomfortable declaring that to the rest of the world.

Let’s take a lesson from Noah. Let’s ask ourselves how we would feel if our spouse were gone and then let’s treat them like today might be the last day we ever have together. Let’s shout our love for our significant others from the rooftop or out the car window! Let’s tell our partner how much we miss them when they’re away from us - and why not go all out and pound the wall with your fists, like Noah did? Noah didn’t hold back - he told his feelings to me honestly and openly; even through my amusement, I could feel his pain, I could tell that his young heart was doing pounding and that his stomach was doing that flipping that we all remember from when we first fell in love. 

Noah and Katie are “different” from other teens their age but not because they have a diagnosis that labels them as disabled. They are different because they don’t play games and manipulate (who am I kidding, Miss Diva does do a bit of manipulation with the men in her life); they freely proclaim their love and devotion for each other.  They are different because they aren’t afraid for someone to know when they are sad, or scared, or when their heart is breaking. They are different because with Katie and Noah, what you see is what you get. They don’t pull any punches, mince any words or cut any corners - they call it like they see it, they ask for help when they need to and they don’t have one thought for what someone else’s reaction to their behavior might be. Katie and Noah, and all the kids with special needs I know, are the most authentic people I’ve ever known. And if that makes them “different,” then thats the kind of different I want to be, too.

Our Love Birds

CHATS WITH THE CHAIRMAN - Special Parents

This year, I have the privilege of being a member of Leadership Huntsville - Class 26. We’ve had our Opening Retreat and two program days so far. The first program day was Economic Base Day and included a visit to the factory floor of Toyota Motor Manufacturing of Alabama (a Title Sponsor for Project UP!), a panel discussion with several entrepreneurs about starting a business in Huntsville, a visit to the Intermodal Facility at the Huntsville International Airport, a report from The Huntsville/Madison County Chamber of Commerce and a visit to the unbelievably impressive Hudson Alpha Institute.

Yesterday was our second program day, Federal Day, and was spent on The Redstone Arsenal. We saw some truly amazing things there - some of them so classified that I’d have to shoot you if I told you about them! I was embarrassed to learn how little I knew about what happens on the arsenal; while I’ve always recognized its importance to our community, I had no idea of the scope and magnitude of the work that goes on there, of the brilliant minds who have solved some of the most complex problems the human race has ever faced, or of the dedication to the soldier that drives every action taken by every one of the 36,000 people who work there. I learned anything a soldier in the United States Army touches, wears, eats, drives, flies, launches, or shoots is designed, engineered, tested, procured, modified and maintained right here in Huntsville. While at NASA’s Marshall Space Flight Center, we were told that NASA will be going to Mars in 2013, as casually as if we were being told they were going to Hazel Green - and we believed them when they said that. My father-in-law retired from NASA after a distinguished career as an aeronautical engineer on the Space Shuttle program, and even though I always knew he was very smart, I realized yesterday that I had never really understoond how incredibly smart he was.

At the Hudson Alpha Institute, we learned about the stunning breakthroughs in genetic research that were started by its founder, Jim Hudson, and are being taken to heights maybe even Jim never imagined. Jim is a friend of mine, a modest guy who loves rock and roll music; who is so humble about his accomplishments and discoveries that you’d never guess that he’s up there with Einstein as far as his peers in the scientific community are concerned. The scientists who work at the non-profit institute that Jim founded are working on projects that will completely revolutionize everything from how cancer is treated to how blood is tested for infectious diseases, and a million other things in between.

Last night, I was thinking about how so many of the most brilliant scientists and engineers in the world live in our community and how many of them I know personally. And suddenly, I thought about the parents in our arts education programs for people with special needs and how many of their email addresses end with “@nasa.gov,” or with “@hundsonalpha.org,” or with “@us.army.mil,” or Boeing or Lockheed Martin or hundreds of other “hi-tech names.com.” And my admiration for the parents of our students went up a notch, even higher than it already was.     Meet some of our parents in this short video!

One of our parents hugging her daughter during the
Dance Your Dreams! performance at Panoply 2012

Now, we all know that our children come to us the way they are supposed to, that God doesn’t make any mistakes. None of us want our children to inherit any of our flaws or shortcomings, but of course they do. We all want our children to inherit from us our strengths, our good points and develop those even further than we’ve been able to. I used to be a dancer and was thrilled when my daughter became one too. Alan was a drummer and takes great pride in our son’s musical abilities. What must it feel like to be one of those brilliant scientists or engineers and have a child whose IQ will never top 50? What sort of struggle must they go through to accept that child didn’t inherit one of their greatest strengths and passions? What must it be like to be able to solve engineering problems so that we can take men and women to Mars but not be able to help your child learn to write their name?

And then I thought about those parents who may not be scientists or engineers but who certainly have dreams for their children, like we all do. I have heard from so many of them, who speak freely about their challenges, parents who have told me of the grief they felt when being told their child had a diagnosis that would severely affect their ability to fully function in the world. I’ve often wondered how I would have reacted to that news and while I would like to think that I would have been able to handle such a diagnosis, I know that I would never have been able to do what the parents I know have done. They are made of more resilient stuff than most of us are.

The parents I have come to know handle what’s been dealt to them with a grace and dignity that we should all try to emulate. I see them coming to Merrimack Hall each week toting the things parents are used to toting, like briefcases, purses, lunch boxes, backpacks, sports bags, with siblings in tow as they drop their child off for class. But these parents also navigate wheelchairs, walkers, canes; maintain insulin pumps and cochlear implants; carry with them anti-seizure medicines or other medical equipment that their children are dependent on for survival. And each time I see them, these parents are smiling, excited to be at Merrimack Hall, thrilled to hear what their child accomplished in class that day. Not once in four years have I ever met a parent who was bitter, or felt sorry for themselves, or seemed downtrodden. Mothers and fathers both drop off and pick up kids, and I’ve yet to meet one who acted like their child had anything more serious than an allergy to something.

How in the world do they do it? How do these parents balance and juggle the demands of a career and family, of raising children, when one of their children has a disability, without ever seeming to lose their cool or their patience? How do they go through the battles the fight each day and still have a smile on their face? Because they do have to go to battle every day - with school systems, with organizations that deny access to their children, with people who segregate and leave their children out. I don’t know how they do it but they do - day in and day out, the parents I’ve had the honor to know strap on their armor and go to battle for their children. At the same time, they relish and adore their children and consistently tell us that they wouldn’t change anything about their children even if they could.

Coach Gene Stallings, the national championship-winning coach for the University of Alabama, had a son who lived to the age of 43 with Down syndrome. We had the honor of spending time with Coach Stallings and are proud to have our programs named in his son’s honor - The Johnny Stallings Arts Programs. Coach Stallings told me that for the first few years of his life, Coach Stallings prayed that God would change Johnny. And one day, just like that, Coach Stallings realized that God hadn’t changed Johnny - God had changed Coach Stallings.

Coach Stallings also said that if God had ever said to him, “I’ll give you one chance to make a choice - you can have a totally healthy son or you can have Johnny” Coach Stallings would have chosen to have Johnny, hands down, no question. Despite the challenges, despite the struggles, despite the health problems Johnny had all of his life; Coach Stallings would have never wanted any other son than Johnny.

Maybe that’s what having a child with special needs does to a parent - it changes them in a profound way that allows them to put life and its challenges into perspective. Maybe that’s how they are able to not sweat the small stuff, to never seem down or discouraged. All I know is that God must give special children to very special parents, parents who are more than equal to the task. I am in awe of each and every one of them.

Yes, we have some brilliant minds in our community. And we also have some brilliant parents here as well; parents who should be an example to rest of us of what it means to be a parent - to love and accept our children for the individuals they are, to celebrate their differences, to embrace their challenges. How humbling it is to be in their presence and I admire them - oh, how I admire them. They are the most special parents I’ve ever known.

CHATS WITH THE CHAIRMAN - One of My Favorite Pictures

Elianna and Austin walking on-stage at Panoply 2009

I love this picture for two reasons. The first is that the handsome guy on the left is my son, Austin. The second reason is that the little pixie in the jungle print costume is precious Elianna, who at the time of this photo was six-years-old. They were entering the stage for Dance Your Dreams! first performance at Panoply, back in 2009, and as you can see from the smile on her face, Elianna was quite excited. I love the way Austin is helping her, looking down at her with amusement at her exuberance.

The volunteer component is one of the most unique things about our program. Each child is paired with a volunteer - or a coach as we call them - who provides whatever level of assistance that child requires. For kids like Elianna with mobility issues, that means complete physical support so that she can actually dance. For other kids, they may require less physical assistance but more help staying on task, or maybe for another with a language delay, their coach provides communication. Our teens commit to helping one child for a semester at a time, so that our students have a consistent presence with them, someone who can learn over time what they need help with the most.

I've said over and over that I never know who to be more proud of - our students or our coaches, because the accomplishments of both groups are remarkable. We have over 80 teenagers who give their time week in and week out, kids who are already busy with theatre groups, show choirs, dance studios, cheerleading squads, dance teams and more. The coaches become so attached to their students, so invested in their success, that unless it’s final exam time, or maybe prom time, they rarely miss a class. It has been wonderful to watch the relationships that have formed between the coaches and their students, relationships that develop into babysitting gigs, shared outings, both families joining together to celebrate birthdays and graduations. So far, we’ve had at least three volunteers that I know of who have graduated and headed off to college with a major of either special education or physical therapy because of their experience with our students.

When Austin graduated from high school and was preparing to head to Ole Miss for his freshman year of college, I couldn’t get his attention about what he needed to take for his dorm room. What sort of bedspread to you want? I don’t care. Have you talked to your roommate about which one of you is bringing a TV? No. Have you packed your sheets and towels yet? I’ll do it later. It was very irritating, to say the least, that Austin had no interest in helping me prepare what he would need in his dorm room. One day, I said - okay, I yelled - “Are you planning to help me pack your things for college at all? Do you have any concern for what you take with you for school?” He answered, “The only thing I care about taking to school with me is the painting Elianna drew for me for graduation.” Seriously. The only thing he really cared about having in his freshman dorm room was a painting Elianna did, all blue and red for Ole Miss, with the words “I love you Austin” written by her.

We had another handsome fellow who volunteered all four years of high school with us. Decorian graduated in May and is currently at Birmingham Southern College on a full scholarship for musical theatre. Not only is he a talented singer/actor, Decorian is also a songwriter, a gifted guitarist and was a star on his school’s football team. He’s also quite the lady’s man and freely admits that the reason he started volunteering with us was because “Merrimack Hall is where all the cute babes hang out.” Decorian was always paired with a boy, which is our practice, but he developed a close relationship with a little girl with Down syndrome right off the bat. They seemed to be drawn to each other by a force greater than either of them. Whenever he walked in the door, she would run across the room and fling herself into his arms. At the time, she wasn’t verbal but it didn’t take words for her to express that she adored Decorian and was thrilled to see him each week.

One afternoon, I was visiting with Decorian in the lobby before class when his cell phone rang. As he answered it, of course the screen lit up. He was holding it where I could plainly see what photo he was using as his screen saver. And when I saw that his screen saver was a picture of him holding the little girl, I immediately got tears in my eyes. What good-looking, popular, big-man-on-campus chooses a photo of himself holding a little girl with Down syndrome as the screen saver on his phone? A remarkable one, if you ask me.

It’s stories like these that let me know that while we are certainly having a positive effect on the lives of our students, who are routinely denied access to participation in activities like arts education, we are having an equally profound effect on the teenagers who volunteer with us. I know that many of Austin’s friends at college asked him about the child’s drawing he had hanging over his bed and that he told them all about Elianna. And I know that Decorian has been impacted by each of the children he worked with. So who knows who’s benefitting more - the kids or the coaches? And the bottom line is who cares! Lives are being changed every day by the pairing of “typical” kids with “special needs” kids and that’s all that matters.

Debra Jenkins, Chairman

CHATS WITH THE CHAIRMAN - Two Girls Starting Their First Jobs

Emma and I this year

Last week, I spent five days helping my daughter, Emma, get settled in her new apartment in Greenville, South Carolina. After graduating from the University of Georgia in May, she landed her first job at The Peace Center, a huge performing arts complex that anchors Greenville’s thriving downtown. We were thrilled, and more than a little amazed, that she was able to find a job in today’s economy; of her closest friends who graduated with her, she is only the second one of them to land a professional job. I was so proud to see her last week, heading off to her office each morning, wearing the work clothes I bought her before she left in place of the yoga pants and t-shirts that made up her college wardrobe. It tugged at my heart a bit to see her sitting at her desk, in the über chic, industrial space that has been converted into The Peace Center, which coincidentally was previously a textile mill building, just like Merrimack Hall. I watched her through the door, before she knew I was there, with the phone to her ear as she sorted through the mail. My little girl actually has a job and I couldn't be more happy for her. 

Today is a big day at Merrimack Hall because we’re offered a young girl her first job. Carolyn is 19-years-old and just graduated from Grissom High School. Carolyn is involved in many activities, has a darling personality and is a caring and compassionate friend to the many young people she knows, loves to come to Merrimack Hall for performances in our regular season, is furthering her education at a local tech school and has been selected to represent the United States in Seoul, Korea, this winter as an ice skater in the Special Olympics. Oh, and Carolyn has autism

    

Caroline at her first day of work

Carolyn has an older sister who is in college in Birmingham, and I think Carolyn is pretty proud of herself for landing a job before her big sister. Ashley Dinges, our Executive Director, worked yesterday preparing a new hire packet for Carolyn, so that all the necessary paperwork will be ready to go and Melissa Reynolds, JSAP Director, is ready with a list of duties to delegate to Carolyn. As these preparations were being made yesterday, I wondered about the activity that took place in Greenville before my daughter reported for her first day on the job September 5, and imagined The Peace Center was doing the same things for Emma on September 4 that we were doing for Carolyn yesterday.

     

I also thought about how grateful Alan and I were to The Peace Center for taking a chance on our young, inexperienced daughter. I’ve worried over the past two weeks that Emma might not be completely prepared for her first job, that she might not know some of the standard business etiquette she should, that she wouldn’t know how to compose a proper business email or go to her boss with questions. I have hoped they would be patient with Emma, make allowances for her inexperience, remember why they hired her if she should do anything to highlight her status as a newcomer to the professional world.

    

I’m sure Carolyn’s parents are feeling every emotion today that I felt two weeks ago. I know they are proud that Carolyn has found a job that will challenge and teach her, but one that will also provide her a safe and comfortable environment in which to learn, just like I am for Emma. I know they are a bit anxious about how things will go the first few weeks, just as I am. I know they have fingers crossed that Carolyn will catch on to our procedures, will ask for help when she needs it, will be useful to our team, just like I do for Emma. And I know that when they drop her off with us today, Carolyn’s parents will feel the same rush of pride that Alan and I did when Emma left home for Greenville, and will feel the same tug at their heart to realize that their little girl is growing up and becoming more independent every day, just like Alan and I did.

    

I've known Carolyn and her family for three years now and am excited to have Carolyn join our team. I hope that I will be a patient teacher to Carolyn, that I will provide her with skills she doesn't currently have and help her refine skills she already has mastered. I’m sure that Carolyn will bring new ideas and ways of doing things to the table, will infuse our team with the enthusiasm that comes from someone new joining the staff. Carolyn’s first day on the job will be no different from Emma’s first day. We may have to make some allowances for Carolyn, we may have to compensate for some things she may not be able to do right off the bat. The Peace Center team is having to do the same thing for Emma. Just as I hope Emma’s job will be the first rung in her climb up the professional ladder and will teach her skills that will benefit her throughout her career, I want Carolyn’s experience to offer her new confidence, new skills, new achievements.

    

Every day, I realize more clearly that we are all more alike than we are different; that our hopes and dreams as parents are the same regardless of who our children are, how old they are, or what they have been labeled or diagnosed with. And while I think Emma is ahead of the game, having landed the kind of job her peers are still dreaming of landing, I think Carolyn is even more ahead of the game than Emma. Carolyn is stepping into her first job having already overcome more challenges, obstacles and barriers than Emma has, which makes Carolyn already a more well-rounded first-time employee than any of her typical peers. Carolyn is used to making adjustments for herself, has an arsenal of skills she can use to help her navigate any hurdles she encounters in the world and knows when and how to ask for help when she needs to. And I’m quite sure that I will learn more from working with Carol than she could ever learn from working with me.

-Debra Jenkins, Chairman