Thursday, September 27, 2012

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

Wednesday, September 26, 2012

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

Friday, September 21, 2012

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.

Wednesday, September 19, 2012

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

Tuesday, September 18, 2012

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 ├╝ber 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

CHATS WITH THE CHAIRMAN - We're Going to Change the World


John Mayer’s song, “Waiting on the World to Change” has some profound lyrics that, to me, are a call to action for the younger generation - a siren song for young people to be the change they want to see in the world. I had a brainstorm a few months back that I presented to Hayley, Artistic Director for our programs that she willingly embraced. My idea was to set a dance piece to this song using five of our dancers in Project UP and five of her dancers from her dance studio, Element. The first rehearsal for this piece was held this weekend, and I’m convinced that it will change the world - or at least open a lot of eyes to something in the world that needs to change.

Project UP dancers rehearsing at Element 
We’re using a bench as the center piece of the dance, having it to represent the “place” where kids want to be to have fun and hang out with their friends. The Project UP dancers start off on the bench, having fun with each other, but are soon pushed off the bench by the Element dancers, who are typical teenagers and highly skilled dancers. The piece goes through several transitions with the typical teens using the bench, the teens with special needs trying to join in with them on the bench only to be rejected and ends with the typical teens joining the Project UP kids, realizing that they were wrong to exclude kids just because they are “different.” I will post a video of the piece as soon as it is more fully formed and rehearsed, but based on the first rehearsal; I’m convinced it will have a profound effect on the audiences that see it.

We will debut the piece at our Sixth Annual Evening of Dance in January and then will take it on the road to a dance competition in Atlanta, where it will be performed in front of an audience of several hundred dancers from across the Southeast. It is my hope that this piece will, at the most, inspire dance studios and choreographers to include kids with special needs in their dance studios and companies, and at the least will move one person to think about how accepting they are to people who have differences from what society defines as “normal.”

It has already had a profound effect on Hayley and me, as the piece is being created, and on the ten kids who are dancing in it. Before we started setting choreography, we had a discussion with the kids about the story we are trying to tell with this piece - a story of feeling left out, being ignored and being made to feel unwelcome. All of the kids, typical or disabled, were able to recall times when they had felt the same emotions of being excluded from something they wanted to do. I watched five teenagers who are trained athletes open their hearts and minds to the artistic expression of five teenagers who face barriers everywhere they go. At the end of our first three hour rehearsal, friendships were established and the notion of what it means to be different was challenged.

We may not have changed the world yet, but we have begun to change ten teenagers, and that’s enough of a great start for me! Stay tuned for updates on how we progress through this journey of discovery, and join us if you can on January 11 or 12, 2013, to see if we’ve come close to changing the world, or at least changing a few hearts and minds. Tickets to the Evening of Dance will be on sale soon at www.merrimackhall.com, and I hope you can join us in our mission of changing the world, one barrier at a time.

Debra Jenkins, Chairman

Monday, September 17, 2012

CHATS WITH THE CHAIRMAN - When My Heart Was Stolen


In October 2008, we launched our first class of Dance Your Dreams!, our initial Johnny Stallings Arts Program class that was made up of 9 little girls and 1 boy who ranged in age from 4 to 12 and who had either Down syndrome, cerebral palsy, autism or a couple of other developmental disabilities. We had not met all of the children before the first class met and didn’t quite know what to expect our students to be like, as Hayley Henderson, Artistic Director for the programs, and I had no experience with children who lived with such difficult challenges. We were nervous and unsure of ourselves, feeling an intense fear that we might unwittingly do something wrong that might physically hurt the children. This was, after all, a dance class we were offering, and some of the children were immobile, several were visually or hearing impaired and most of them had language delays that made communication with them difficult. So with a great deal of trepidation mixed with hearts full of excitement, we waited at the front door of Merrimack Hall for the students to arrive for their first class.

Elianna on her first day of class
We had set up a registration table right inside the front door, and the first child through the door was Elianna, a darling pixie of a girl with a precious bob haircut and adorable wire-rimmed glasses. She barreled through the door in her walker, necessary because her legs are basically immobile due to cerebral palsy, charging full speed ahead to our table. Before we could say, “Hello” to her, she announced, “Hi! My name is Elianna. 
E-L-I-A-N-N-A. I’m five and a half years old and I’m here to dance.”

Hayley and I locked eyes and shared a look that said, “This little girl is something else, and this isn’t scary - it’s going to be blast!” As we took down her registration information from her dad, Elianna zoomed passed the table, asking which way to go for her dance class. A volunteer pointed her to the elevator, where she pushed the button and started to enter, but her walker got hung up on the threshold. Before anyone could get to her to offer their assistance, I watched her lift up her walker, place it over the threshold and literally lift her little body up and over that barrier. Absolutely nothing was going to stop her from getting on that elevator and heading up to her dance class. And at that moment, watching that sort of bravery and determination from a child so young, my heart was stolen, and I was completely in love.
Elianna with her volunteer
At the end of the first class, Elianna asked her volunteer to lean down so she could whisper in her ear, “I’ve had a really good time. But next time I come here, I could really use some glitter and a crown.” Of course, I went straight to Party City and bought glittery princess crowns for all the little girls and a towering king’s crown for our little boy.

After a few weeks of class, Elianna’s father asked her why she liked to dance so much. Remember, this is a child who cannot walk but loves to dance. Her answer was, “I like dance because it’s beautiful. It's like dreaming with your feet.” My heart has belonged to Elianna and all of our other students every day for the past four years. And she’s right - that’s just what dancing is, whether you can walk or not, whether you have rhythm or not, whether you ballroom dance, tap dance or just groove out to your favorite tunes. The next time you are having a bad day, feeling down or simply need a good pick-me-up, turn on some music and dream with your feet!

Debra Jenkins, Chairman

Sunday, September 16, 2012

CHATS WITH THE CHAIRMAN - What's Your Label?


Last week, I had a meeting with representatives from a state agency that provides services to people with developmental disabilities, and I unwittingly made a rather significant faux pas. What I did was refer to someone as “a disabled person who is wheelchair bound.” Based on the reaction I got, I’m guessing this reference is on par with calling someone something as offensive as a misogynist or a bigot. I’ve only been working with people with special needs for four years and haven’t been schooled in the politically correct terminology to use for different situations. Realizing my mistake, I’ve been thinking a lot about the labels we assign to people and what those labels really mean.

Take special needs, for instance. What exactly do we mean when we attach the label “special needs” to someone? That term could apply to every human on the planet, when you think about it. We all have special needs that we expect to be accommodated or overlooked. A person with a severe peanut allergy has a special need to avoid eating in restaurants that use peanut oil or that serve peanuts by the bucket while you wait for your meal to be served. A person who is shy and uncomfortable initiating conversations with others has a special need for people to understand this and make efforts to make them feel welcome and valued even though their natural tendency may be to isolate themselves from others. And children, in particular, have lots of special needs. They need to have furniture that is smaller, they need to have someone hold their hand when they cross the street, and preschoolers need to have someone read to them until they learn to read themselves. Of course, when we say someone has special needs, we all know that’s code for a disability, but why do we have to designate someone with that label at all? If a person is disabled either physically or developmentally, why do we feel the need to point that out when describing them?

Abbey Alford performing at the Dream Big! Recital in May 2011
I’ve been described with lots of labels in my life and you have too. I’ve been labeled a daughter, a sister, a wife, a mother, a dancer, a teacher, a volunteer, a philanthropist. I’ve also been labeled as judgmental, opinionated and bossy, but at the same time I’ve been called passionate in my beliefs and a take-charge leader.

I guess labels are important because they can help paint a picture of who someone is and what they do, what makes them tick. But they can also unfairly pin us down to a few traits we may have, painting a broad-brushed picture of who each of us really are.

The politically correct labels for people who have developmental or physical disabilities seem to change all the time. They have been called everything from afflicted and retarded to special or handicapped. I’ve learned that whatever label we use should be people oriented; the explanation for what disability they live with should be what is defined as “people directed.” For example, it’s acceptable to say people with disabilities but not to say disabled people. They are, after all, people first.

The students in my programs, The Johnny Stallings Arts Programs, live with challenges that have profound effects on the way they navigate life, but they are so much more than the labels they are assigned. Just like I am so much more than a blonde, middle-aged, woman with Crohn’s disease who is a married mother of two grown children, my students are so much more than their conditions. Even so, I find myself feeling it necessary to include their label when I talk about them. This isn’t because their disability is the most important thing you should know about them. Rather it's because their achievements, comments, philosophies and behaviors are extraordinary in and of themselves. When you add to that the knowledge that they live with conditions that seriously impede their ability to fully function in day-to-day activities, their labels make them even more extraordinary individuals.

So when I use a label when explaining something that one of our students say or do, I’m not labeling them because I think their conditions warrant explanation. I use their labels because when you know the challenges they live with, their actions and comments put into clear perspective the amazing wisdom and ability they exhibit.

Take, for example, Abbey. She has many labels I could use to describe her. She is a 13-year-old girl being raised by a single mother, extremely precocious and remarkably intelligent, self-aware in a way uncommon for kids her age because she acknowledges her strengths and her weaknesses, a leader in her school and an academic over-achiever, a dancer and an actress, an astute and keen observer of people, and she just happens to have cerebral palsy. Cerebral palsy manifests itself in her in life-altering ways. She has difficulty walking, has endured multiple surgeries to do everything from replacing a hip to breaking and resetting bones in her legs to potentially improve her mobility. She has difficulty eating with utensils, buttoning her clothes, tying her shoes, using a pencil because her fine motor skills are impeded by the cerebral palsy that was caused by oxygen deprivation during her birth. When you hear her referred to as a child with special needs, rather than letting that label tell you what she can’t do, I hope that label will amplify and enlarge the scope of her achievements in spite of her limitations.

We all have limitations; we all have dysfunctions in our personalities that interfere with our ability to be our best, to achieve all that we are capable of. But because we are “normal,” we don’t normally have our deficiencies pointed out when we are described by others. We don’t normally say something like, “He is a great leader but he is not a good public speaker; or “She is so smart but is she’s overweight; or “He is a terrific accountant but he is neurotic.”

So, when I label Abbey as a child with special needs, I hope it will enlighten others to the unbelievable abilities she has in spite of her label. Her label makes the profound things I’ve heard her say even more profound. Like last month, when Abbey told me, “I’ve decided that everyone has special needs, not just those of us who have obvious disabilities. And I think we all have two special needs in common. We all have the special need to be accepted and we all have the special need to be loved. Some people’s special needs are on the outside, like mine. And other people’s special needs are on the inside, where we can’t see them right away.”

The students I have the honor of working with have special needs. And so do I. And so do you. All of us should be given credit for the things we are able to do in spite of our special needs. I hope you’ll think about what your special needs are and I hope you will take inspiration from others with special needs to overcome yours, whatever they may be. My students do just that every day - they overcome their special needs to achieve their dreams.

-Debra Jenkins, Chairman

Monday, September 10, 2012

CHATS WITH THE CHAIRMAN - Fall is Here

Back on August 11, 2012, there was the slightest tinge of fall in the air. Not enough to really notice, but when you’ve lived in Alabama all your life, as I have, you tend to become aware of that moment, usually sometime in mid-August,  when the humidity lifts ever so slightly, making it feel less like a convection oven outside than it has been for the previous four months. The temperature may still be in the low 90s, but when the humidity lets up even a fraction of a percentage, you can feel it in the air. An interesting coincidence, since the first time I walked outside on August 11 and noticed that lightness in the air, I was heading out to a local department store where the teenagers in the arts program that I founded for people with special needs were performing at a back-to-school fashion show.

Project UP students and I at the Belk fashion show performance

My program is called The Johnny Stallings Arts Program (JSAP) and through its five components, provides visual and performing arts education, along with social and cultural activities, to children, teens and adults with a variety of special needs like Down syndrome, autism and cerebral palsy. I’ve decided to start blogging about these programs and my life because of how profoundly I’ve been affected by having relationships with people who have special needs and their families. When I started my program in 2008, I had no experience of any sort with people who have disabilities. Almost immediately, I knew I had found my life’s calling. I have learned more in the past four years from people who society tells us are “less than” than I’ve ever learned from my typical peers.

So anyway, eight of Project UP’s girls performed a hip hop routine at the fashion show and did a fantastic job, as always. We actually have 26 students that are both boys and girls, ages 13-21, in Project UP, but there were only eight girls who were available to participate. Project UP performed first, followed by a children’s theatre group performing songs from their production of Annie, followed by the fashion show. After Project UP performed, they sat in reserved seats with me to watch the Annie performers and the parade of back-to-school outfits.  On my left was an 18-year-old student who has autism and on my right was a 13-year-old who has a developmental disability. I have no idea what her actual diagnosis is.
After working with my students for four years now, I no longer care to know what their diagnosis is, unless it’s something life threatening, like a peanut allergy. When I first started my program, I wanted to know everything about each child’s diagnosis, but now I realize that it doesn’t matter. I care what their diagnosis is - be it Down syndrome, cerebral palsy, autism or something else - about as much as I care what color their hair is. It simply makes no difference to me anymore because the children, teens and adults that I know are so much more than their diagnosis.

At any rate, while the lead actress was singing “The Sun Will Come Out Tomorrow,” the girl on my left was rocking back and forth and repeating to me over and over, “She sings really good. I like her singing. She sings really good, I like her singing.” I agreed with her, and added, “You guys sing really good too!” She then said, “Yes, we sing really good. We are really good singers. We sing really good.”

The girl on my right leaned in and asked me what we were talking about. I said, “We are talking about how well that little girl can sing.” She agreed with me. Then I said, “You guys sing really good too! Y’all sing as good as she does.” The girl looked at me quizzically and said, “What did you say?” I repeated, “Y’all sing as good as that little girl does.” She looked at me with the most dumbfounded expression on her face and answered with a great deal of disdain, “WHAT in the WORLD are you talking about? We do NOT sing as good as that girl and you know it.” I cracked up laughing - at her vehement disagreement with me, at her sarcastic retort. And then I hugged her and said, “You know what? You’re right. You guys do not sing nearly as good as that little girl does. But I love the way you sing anyway.”

She accepted my comment with a nod of her head, as if she was telling me, “Now, that’s more like it.” She wanted my honesty - she didn’t want my compliments if they weren’t truthful. She wanted me to shoot straight with her and when I did, she accepted the truth.

No, the students in Project UP cannot sing as well as that little girl. And they know it. But that does nothing to dampen their enthusiasm for singing, which is exactly what I love about them and is why listening to the Project UP kids sing is better to me than when I sat on the front row for Celine Dion’s show in Vegas and watched her sing a French lullaby directly to my husband, Alan.

The sort of singing - and dancing and acting - that the kids in Project UP do is the purest form of artistic expression, in my humble opinion, because when they sing, or dance, or act, they are doing it simply because they have the urge to express themselves through that art form. They aren’t concerned with form, pedagogy, tone, technique; they aren’t concerned with anyone’s reaction to their performance. While they do love a standing ovation, they don’t perform for applause or approval. They perform simply because they want to and because they can. I have been lucky enough to see some amazing artistic performances, from Broadway to London’s West End, even getting to have a private meet and greet with Paul McCartney before attending his concert in Vegas in 2005. Nothing I’ve ever seen can even come close to the pure artistic expression I see each time I watch our Project UP kids perform. To me, they embody what being an artist really is, and that’s why Alan and I, and our organization, have devoted ourselves to providing access to arts education and performance opportunities to people with special needs. I hope I will continue to have chances to see amazing professional artists perform but if I never get the chance to go to New York or to a concert again, it won’t matter. I’ve got Project UP’s performances to see, and that’s more than enough for me.

-Debra Jenkins, Chairman