Tuesday, November 5, 2013

Living the Rich Life

Back in 2006, Alan and I were living the good life. Troubles with our son, Austin, notwithstanding, we, "Had it made," so to speak. Alan had achieved a level of financial success that afforded us the luxury of enjoying the finer things…great vacations, a lovely home, nice clothes and cars…and also afforded us the luxury of knowing that we could send our kids to college, take care of ourselves into retirement and in general could live without the pressure that worry over money can create. There was no reason why we couldn't have spent the last seven years continuing to live that rich life. But doing that wasn't enough for Alan.
He wasn't satisfied with, "Making a bunch of money and spending the rest of my life buying things." When he said that to me, I told him I was fine with spending the rest of my life buying things...but I didn't really mean it. Before 2007, when Merrimack opened and especially until 2008, when I started The Johnny Stallings Arts Program, life was good, but it was hollow. There are only so many pairs of Monolo Blaniks a girl needs, only so many times you can jet off to some fabulous destination before you realize that those things, while awfully nice, do not a happy life make.

Instead of enjoying lunches with friends, going on shopping excursions and taking on the occasional volunteer chairmanship, I have worked harder than I've ever worked in my life - and Alan has too - for no pay. We've gotten lots of glory for our good works, won lots of awards, been patted on the back a lot, but we've sacrificed a lot these seven years - we've each donated 60 or more hours a week, we've donated millions of dollars, we've travelled a lot on behalf of Merrimack but haven't had a proper vacation since 2010.
 People have asked us why we've chosen to spend our money and our time doing this, leveraging what our financial advisors would tell you is a disproportionate amount of our resources to create and sustain Merrimack Hall. We always answer that we've chosen to do this because we can and because it's what we think we are supposed to do in order to be good stewards of the good fortune that's come our way.

As I've grown to know and love so many people with special needs and their families, I've certainly felt gratified for the work we are doing. I've known that my life has been enriched ten-fold by The Johnny Stallings Arts Program. But I didn't realize the true extent of that enrichment until Saturday afternoon, sitting at Epworth Methodist Church at the memorial service for Darby Jones.

Darby's mother, Valerie, wanted ten of Darby's closest friends to perform a dance at the service. We agreed on the song "Edelweiss," as it was one of Darby's favorites and something she and her beloved grandmother sang together often. All of last week, we had a grief counselor at Merrimack Hall every afternoon, talking with our students and their families as they worked through their sorrow. While the mommas cried buckets of tears last week, none of the students did. At the service, Melissa, Claire, Hayley, Sanders and I sat with the girls in the choir loft, partially hidden from the congregation by a large video screen. When the first chords of the organists prelude began, Anna C. lowered her head, as tears began streaming down her cheeks. Her best friend, Anna G. put her arm around Anna C., hugging her gently and stroking her hair. Anna G. kept repeating, "It's okay. We still have each other." As Anna C.'s quiet tears turned to sobs, Anna G. began to cry herself. But even as tears streamed down her own face, Anna G. remained as calm as she could, determined to comfort her friend. Many times during the service, we adults had to play "musical chairs" so that we could position ourselves near those who needed a shoulder to lean on and at one time or another in the service, each of the girls cried…gut wrenching sobs as they accepted the finality of the loss of their friend.

At that moment, I realized that those ten girls - and all the
kids and adults in JSAP - have become family to me and that we've become family to them. How hard it must have been for those ten mommas to leave their children with us at the service, how much their hearts must have ached to see their children grieving and how much they trusted us to take care of their daughters during such an emotional event. Family is who we trust our most tender emotions with, family is who we turn to when our hearts are broken. The knowledge that those mommas trusted their babies with us, that we were all grieving a shared loss and that, as Anna G. said, "We still have each other," brought a new revelation to me, a new understanding of the reason why Alan and I are working so hard to sustain Merrimack Hall.

The reason is that an extended family has been created. People who would never have met before have been brought together in bonds of friendship and lives are being shared through JSAP.  Because Alan wasn't satisfied with spending the rest of his life buying things, we have been allowed to be the facilitators of an amazing group of people, numbering in the hundreds now, who share a love of the arts and a love for people with special needs. This group of people is more valuable than anything money could ever buy. Prior to the advent of JSAP in 2008, I had limited contact with people with special needs. Today, I know hundreds of people and their families who have brought meaning and joy to my life. In this month of gratitude, I am overwhelmed with gratitude to Alan for having such a giving heart, to God for placing us in this position in the first place and to all the people I've come to know and love over the past seven years.

As we said good bye to Darby on Saturday, I silently expressed my gratitude to her. Darby and Valerie are responsible for about half of all of our participants - so wide was their circle of friends that each time we've added a new program, Darby and Valerie were our best recruiters. I'm grateful to Darby for bringing so many new people into my life,
for being one of our original students - true pioneers they each are - and for being such a source of inspiration to me as our programs developed. I told Darby that I will never forget her, that she will live on in my heart and in every thing we do at Merrimack Hall. I thanked her for sharing her beautiful life and her many talents with me. Mostly, I thanked Darby for helping me see what these past seven years have meant to my personal life. As we all comforted each other and grieved together, I saw with clarity that my life today is more rich than it ever would have been before.

The life of one little girl brought hundreds of people together in celebration on Saturday, but no one was celebrating more than me…I was celebrating the knowledge that because of Darby and JSAP, Alan and I have more riches than money could every bring. Because of Darby, I understand with greater insight why we must continue to work, raise money and create new programs. As her loss continues to bring our JSAP family closer together, we will work even harder in her memory. We will celebrate her life in everything we do. And I will be forever grateful to her for showing me that I'm the richest woman who ever lived.

Tuesday, October 29, 2013

Darby Jones

Yesterday at 1:30 p.m., heaven gained a new angel.
First recital 2009
I'm devastated by the loss of precious Darby Jones, one of the "Original Posse" in The Johnny Stallings Arts Program. I thought I had wrapped my head around the thought of losing her but of course, when it really happened I wasn't prepared at all. Today, when I pulled into the parking lot of Merrimack Hall, I immediately broke down…knowing that I will never again see Darby dance on our stage hit me like a brick wall. I thought of all the times I've seen her pull into the parking lot with her mom, beaming from ear to ear because she was so excited to get to dance class or to perform in a show. I remembered back to our very first class on October 8, 2008. Darby was bald and in the midst of a round of treatment for her third bout with leukemia. Weak and pale, she was determined to get through those first few months of class, no matter how exhausted or sick she was.
Our Original Posse 
Merrimack Hall became one of her favorite places...the place where she lived out her dreams of being a star. We have presented many luminous performers on the stage at Merrimack Hall - people who have won Emmys, Tonys and Oscars. But none of them could hold a candle to seeing Darby perform on stage. I will miss her so much.

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

The Project UP kids told me things today like, "Did you know Darby is in heaven now? I bet she's dancing up there." Or, "Darby has died but she will always be in our hearts, won't she?" Or the best one, "Could you be quiet for a minute? I'm trying to talk to Darby right now." One girl said, "I'm going to miss her a lot but she'll be here every time we dance," as she pointed to her own  heart. Once again, I underestimated our students and their capacity to grasp what's really important in life.
Camp Merrimack 2009

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

Thursday, August 22, 2013

Response to "My 'Perfect' Family

Well, clearly I struck a nerve with the blog post about my "perfect" family! There are a few comments posted directly on the blog, but my facebook inbox and email have exploded with messages of support. I'm not sure what resonated most but based on the comments, it seems the notion that we all have special needs is what people related to.

While I'm grateful to hear from so many people about the blog post, it's also heartbreaking to realize how many people are affected by drug addiction...it has crept into our society at every level, in every demographic. I have attended many NA (Narcotics Anonymous) meetings with Austin and often find myself thinking,
Austin, summer 2012
"These people don't look like drug addicts," but neither does Austin. What does a drug addict look like? He or she looks just like you or me.

I've had a hard time understanding the classification of addiction as a disease, as I'm sure many other people have. There's an element of choice that goes into using drugs that makes it hard to distinguish what part of addiction is the disease and what part of it is the addict making conscious decisions. All I know about the science of addiction is that there's something in an addict's brain that's different from the rest of us, something that overrides their ability to discriminate right from wrong. Because drug use is illegal (except for alcohol, which is most certainly a drug), it has a stigma attached to it, making it socially unacceptable to talk about.

Whether you believe its a disease or not, being a family member of a person who is a drug addict is  lonely and isolating. I'm a member of a group of women who have adult children struggling with addiction...the woman who started the group named it the "Casserole Club" because she said, "If our children had cancer, people would bring us a casserole. But because they are addicts, people don't even ask about our kids."  Many of the people who reached out to me said that it was brave of Austin and me to make his private struggle public.
Love this t-shirt!
To keep addiction  hidden in the shadows makes the stigma and shame that recovering addicts live with much worse; I may be ashamed for some of the things Austin has done, but I've never been ashamed of Austin.

Something I've found so powerful about attending NA meetings is the overriding tone of tolerance and acceptance that NA advocates. For those of you who don't know, people who go to NA meetings (or AA or any of the other anonymous support groups) are people who are committed to recovering from their addiction, which is very different from someone who is in active addiction, doing anything necessary to feed their drug habit. Once you decide you are ready for recovery and enter an NA meeting, there is no judgement from anyone about how you ended up there...the group is just glad you're on the path to a new life. I went to an NA meeting in Atlanta once - a midnight meeting for people who are gay, lesbian or transgender and even though I'm not gay, or a lesbian, or transgender or an addict, there was no judgement from anyone in the room - they accepted me into their group as if I was one of them.

The only other place I've ever seen such wide open acceptance is in our classes for people with special needs. People with disabilities don't judge anyone, they welcome everyone with open arms. They never judge what you look like, what you wear, where you live, how you talk, what you talk about, how you behave, what you do for a living...they never judge anything at all.

I bet you're like me...I don't want others to judge me; I want others to be patient with me; I hope other people will accept me the way I am. If I want others to accept and tolerate me, I should extend acceptance and tolerance to others all the time...drug addicts and people with disabilities have taught me that.

I certainly don't mean this to sound like I'm placing drug addicts and people with disabilities in the same category...not in any way! Drug addicts - when they are active in their addiction - are selfish, cowardly, liars who will do anything imaginable to get what they want. Drug addicts in recovery are just like the rest of us...we all have demons we have to battle within ourselves. I'm just saying that I've seen the greatest examples of acceptance and tolerance from people in these two groups. If we were all just a bit more tolerant and accepting of others, wouldn't it be a nicer world?

I'd like to think that volunteering in our program is one of the things that helped Austin get his life back on track. By spending time with people who struggle with challenges they have no control over, Austin was able to realize that he did have control over what he was struggling with and thankfully, he has chosen to work at overcoming his addiction. He has said that one of the things he's most ashamed of is that he willingly chose to do things that disabled his life when he loves so many people who face challenges every day that could limit their lives. He watches our students overcome those challenges and takes inspiration from them to stay clean and healthy.

I'm not sure what the message of this blog is. Maybe it's "Thank you for reading "My 'Perfect Family," or maybe it's "Let's all try to be more tolerant and accepting of others" or maybe it's "If you know someone with an addict in their family, reach out and let them know you care."
Kayla, Anna Ryane, Darby, Laura Beth and Carolyn
I guess the real point is that the most tolerant, accepting and inspirational people I've ever met are people with disabilities. They have a courage I couldn't begin to emulate, a willingness to accept everyone just the way God made us. Drop by Merrimack Hall any time you're in need of some acceptance, tolerance or inspiration...classes resume September 3!

Sunday, August 18, 2013

Noah

The best thing about my work at Merrimack Hall is the people I get to know...old and young, from all backgrounds and with all levels of ability, from every ethnic group and with every sort of religious affiliation...my world has expanded exponentially from having our students, their families and our volunteers in my life. While everyone involved with The Johnny Stallings Arts Program brings something unique to the table, its our students who have most impacted me and my view of the world. I say all the time that I've learned more from people who our society tells us are "less than" than I've ever learned from anyone who's "normal!"

Take Noah, for example. The oldest of eight children, Noah is a senior at Grissom High School. He loves being in Project UP and never fails to steal the show in some way - a natural born showman, Noah has impeccable timing and a freedom of expression that is a joy to watch. Noah is in love with another one of our students, Katie. They have big plans for the future, which include getting married when they turn 25, going to Hollywood on their honeymoon and making a film they've written entitled "Katie's Big Break." Click on the link below in a new window to see why I find Noah so fascinating! You have to hear him speak before you read the rest of this blog - he's hilarious!

http://www.youtube.com/watch?v=J-ErCuXM5DM

Last fall, I was out of town for a week. The staff told me that when Noah arrived for Project UP, he became quite agitated that I wasn't in the office. He wanted to know 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 my team thought Noah was going to have a complete come-apart, it was time for class to start. All the kids made their way up to the dance studio and Noah forgot about being upset over my absence.

The following week, I made it a point to be waiting at the front door for Noah's arrival. I had heard that Katie was sick with a sinus infection and had missed a few days of school and that Katie's mom, Lori, was sick with pneumonia. When Noah walked through the door and saw me, he screwed his face up tight. The tears started flowing and as we hugged, his tears turned to sobs - albeit, highly overly dramatic sobs. The conversation we had went like this, with Noah doing his over-the-top sobbing thing the entire time he was talking:

"Where in the world were you last week?"

Noah and Katie at The Connection
"I was in Greenville, South Carolina visiting my daughter."

"Why? That wasn't necessary, was it?"

"Yes, Noah. My daughter just moved there and I was helping her move into her apartment."

"That doesn't really 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, it's been horrible. How long does this pneumonia thing last?"

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

"No, Katie doesn't have it yet but I'm sure she will get it soon. Miss Lori has it and its been forever and I miss my future wife!" He was really sobbing at 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 for a few weeks."

"And if everything weren't bad enough, I had to ride here with Mrs. Hulgan and I like Mrs. Hulgan but she's not Miss Lori. 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..." (at this point, he walked to the wall, put his forehead against it and started beating on the wall with his fists. Other parents were standing around and I looked at them, saying behind Noah's back, "Hey, could someone give me a hand here?" But it was so very amusing that they just watched and laughed, telling me I was on my own). "I JUST MISS MY FUTURE WIFE SO MUCH!"

Having heard her name, Mrs. Hulgan walked up to us and said, "Noah, did you need something from me?"

"Am I going to have to ride in your car again after today?"

"Yes," Mrs. Hulgan replied. "Remember? We are carpooling now. You are riding with me every third Tuesday."

Noah looked at me with disgust and panic. "I HATE CARPOOLING!"

I said, "Noah, you don't need to get yourself so upset. Katie will be back in school in another day or two. Now we're going to have a fun class today so let's come on inside and see who else is here."

"I don't care who's here if Katie isn't here. You have no idea how this feels! I love Katie so much and I just know she's going to die!"

Noah in "My North Pole Adventure"
All of the adults within earshot struggled not to burst out laughing as Noah wailed his anguish over missing his girlfriend and over the prospect of her impending death.

"I know exactly what's going to happen," Noah continued. "Katie is going to get pneumonia and die because that's what happened to my grandmother and my grandfather was never the same again. That's what happens - you get married and you are married for a really long time and then you die. I will be so upset when that happens to Katie."

"Okay, 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," he sniffled.

"I've been married for 27 years. Do you think that's a long time?"

"Yeah."

"Do I look like I'm about to die?"

"No."

"Okay. You and Katie are going to get married when you're 25 and you're going to be married for a really, really long time before either one of you is old enough to die. Katie will be back in school soon and it's time for you to get up to class."

Noah turned and looked intently at me.

"Now that I think about it, you don't look so great after all."

How do you respond to something like that...something so completely honest? He was right - I didn't look too great that day, maybe I did look like I was on the verge of death. Unlike you and me, Noah tells it like it is, calls it as he sees it. His open and keen observations on everything are always right on the money. And we think he's the one who's different?

Each time I'm around Noah, I tell myself that I'm going to start being more honest and up front in my communications with others, that I'm going to tell people how I feel with as much honest emotion as Noah does. He will tell anyone who asks how much he loves Katie - how many "normal" 18-year-old boys would do that? But it's hard to break old habits and I constantly find myself talking with others in a guarded manner, trying to measure my words.
Noah and Katie at prom 2013

Of course, we can't just blurt out the first thing that comes to our minds - "You're not looking too great after all," may not be something we should say to someone but there should be a happy medium between the mind games we play with others and Noah's raw honesty. I'm going to keep looking for that balance and watching Noah for clues on how to attain it, knowing that he will always keep me laughing!






Wednesday, August 14, 2013

My "Perfect" Family

Recently, a good friend of mine told me that he has always thought of my family as one of those "perfect" ones, that he thought we had it all together. He admired our lovely home, was impressed with our decision to start our own non-profit and create programs for people with special needs, knew that Alan has been very successful in his career. What could possibly be wrong behind the gates of that gorgeous house, he thought? I laughed out loud at him.

Like every family, we have plenty of challenges, problems and dysfunctions. Like all families, we've had situations that have brought us to our knees. But there has been one challenge that we thought we might never overcome, one that has brought Alan and me to the brink of despair over and over for the past six years.
Austin, age 4
Our 21-year-old son, Austin, has struggled with drug addiction. I write this with Austin's permission, as he shares my hope our message might resonate with someone out there who has shared this struggle.


Austin tried marijuana for the first time in the eighth grade and I caught him almost immediately. We handled this the best way we knew how; he was grounded, we had many conversations about the dangers of drugs and alcohol, we screened who he spent time with and who he was allowed to invite into our home. At the end of his grounding period, we lifted our restrictions on him and what happened? Less than three months later, I found rolling papers in his pants pocket as I was doing laundry. This cycle was repeated over and over for the next six years...like lather, rinse, repeat.


By the beginning of his junior year of high school, his GPA was so low we knew he didn't have a chance of being admitted to college, a huge blow, as we had always dreamed of sending both of our children to college. The second semester of that year, we allowed him to withdraw from public school and enroll in a private, alternative school. Almost all of the students in this school were there because they had been expelled from high school, primarily for problems with drugs and alcohol, and random drug screenings were a normal routine. Within a week of enrolling there, Austin failed a drug test, but this time he failed for more than just pot.

We immediately sent him to a wilderness therapy program, a 12-week ordeal where he slept in a tee-pee, did manual labor all day, continued with his online school work and ended the stay with a 14-mile hike on the Appalachian Trail. Everything about those 12-weeks was hell, for us and for Austin. He was deprived of contact with the outside world, was surrounded by kids who were referred by the juvenile justice system and felt completely betrayed by us for sending him there. We missed him terribly but at the same time felt guilty for the relief we felt at having him out of the house. And we did feel relief because at least we knew where he was, what he was doing and that he was safe.

He came home a bit humbled and we continued the therapy he had started there by working with a family therapist, but within three months we were back exactly where we started. The only good thing about that program was that he was forced to comply with academic requirements and had managed to re-take all of his junior year courses, bringing his GPA up to an acceptable level. We opted to have him remain enrolled in the alternative school to finish out his high school education. But being isolated from his peers, without the social stimulation that a normal high school gives, Austin was adrift and his drug use escalated. We knew he was experimenting with other things besides pot, but had no clue how deep and how bad the problem really was.

We managed to hang on to our marriage, but only by a thread, during this time. We were constantly at odds with each other over the proper way to respond to Austin's issues, with Alan tending to under-react and me overreacting. Austin was accepted to the University of Mississippi, and we let him go but with deep misgivings. I was certain he would fail and had a pessimistic outlook on what would happen; Alan was cautiously optimistic that college would somehow make Austin mature. Midway through his first semester at college, we realized we had a serious drug problem on our hands, withdrew him from college and forced him into drug rehab against his wishes. After participating in the rehab's family week program, we felt we had learned the tools we needed in order to hold our boundaries and get Austin's cooperation in getting his life back on track. Boy, were we wrong.

After his first stint in rehab, we agreed to let him return to Ole Miss and for the next year, he plummeted downhill rapidly. Finally, in April 2012, Austin admitted he needed help, agreed to go to rehab and then to a sober living community, where he finally embraced the 12-Steps of AA and NA and found his way to sobriety. Alan and I are trying to let ourselves believe that the nightmare might be over but are still worried about becoming too hopeful because of how many times and how deeply we've been disappointed in the past; disappointed in ourselves as parents, disappointed in Austin and disappointed that all of our well-intended efforts to help our son had failed over and over.

When my role at Merrimack Hall kicked into high gear, in the fall of 2007, Austin was a new 16-year-old, and his life was starting its downhill spiral. Alan and I had embarked on our mission at exactly the wrong time in our personal life. When I should have been attending to my son, I was busy with Merrimack Hall and when I should have been focusing on things at Merrimack, I was having to give all of my attention to Austin's problems. I felt torn in a million pieces, my heart breaking for my son, my confidence in myself as a mother and in Alan as a father destroyed. As I struggled to find my way in a demanding job outside the home for the first time in fifteen years, I also struggled with finding meaning in the work we set out for our organization. It wasn't until I started our first class for children with special needs that I began to find some solace, and some fulfillment in the volunteer work I do at Merrimack Hall.

And blame? Boy, did I ever. I blamed Alan and myself but I could not seem to assign any of the responsibility for his choices to Austin. I knew in my head that we were both good parents and good people, that we had both attempted to instill in our son the values we shared about working hard, giving back, respecting others and obeying the rules. But in my heart, I felt like a complete failure as a mother and was unfairly disappointed in Alan for not being able to make these problems disappear, as if he had the power to do that. Neither of us were able to accept that our son was spiraling into the dark life of an addict.

When we learned that there would be one boy in our first Dance Your Dreams! class back in 2008,  I told Austin he had to volunteer for the class so that the boy would have a male partner. Austin joined in willingly and became a valuable volunteer for the program as it grew. He has an easy manner with all of our students, an infinite amount of patience with the kids and has developed close relationships with many of them.

With my kids after our first recital
There were so many times during the past five years when I told myself, "Austin has to end up okay eventually, because the way he is with these children shows me that he has a big heart and compassion for others." I held onto that evidence of his true nature through many dark hours.

What a contrast I was faced with as JSAP grew and flourished; seeing parents who's children were afflicted with conditions that would limit their life experience in significant ways, trying to imagine what it must be like to know that your child's disabilities would prevent them from living out the dreams that we all have for our children, made me feel even worse for my son and my family. Austin was blessed with everything he needed to have a full and rewarding life but his choices were handicapping him every bit as much as if he had been born with a physical or developmental disability.
Austin with Elianna at Panoply '08

There are millions of families all over the world who struggle with the disease of addiction because it truly is a family disease - if you have an addict in your family, you know what I'm talking about. Addiction is insidious, affecting each person in the family in life-altering ways. I do not have words for the grief I feel when I imagine what it must be in my beautiful son that made him hate himself so much that he would resort to drug use, nor do I have words to express the guilt I feel for having two healthy children when I'm surrounded by families who's children live with disabilities through no fault of their own. I have learned, through counseling, reading and experience that addiction is a disease and that, as Al Anon teaches, I didn't cause it, I can't control it and I can't cure it. But as a mother, that does nothing to ease the grief, guilt and regret I feel, nor does it stop me from second-guessing every decision we ever made as parents or regretting almost every choice I ever made as Austin's mother. I am slowly coming to terms with the disease my son will deal with for the rest of his life. And the kids in JSAP are a big reason why I'm finally able to do this.

Abbey and Austin became especially close as he worked with her in her weekly class. Abbey knew about Austin's struggles and any time he's not in Huntsville, she asks frequently for updates on his progress. Last summer, Abbey shared with me a statement so profound I was rendered speechless.
These were her words: "I've decided that everyone has special needs. And that we all have two special needs in common. We all have a special need to be loved and we all have a special need to be accepted. Some people's special needs are on the outside, like mine. And some people's special needs are on the inside, like Austin's." What wisdom and comfort I found in those words, spoken by a 13-year old girl who will never be able to walk without difficulty, will never be able to tie her own shoes or button a button because of cerebral palsy.
Austin, Ashley and Abbey
Yes, we all have special needs, not just those of us who appear to be different.

A year ago, we were preparing to video tape a series of interviews with some of our students. The night before the scheduled video shoot, I was wondering to myself how the shoot would go and what sort of insightful or hilarious things the kids might say. I thought of Katie, our 18-year-old diva with Down syndrome who has quite a flare for fashion and frequently wears feather boas, hats and other accessories to personalize her look. As I was wondering what Katie would wear to the shoot, I thought about how cute she would look and suddenly, a revelation occurred to me. I know that people with Down syndrome have certain physical traits in common - almond shaped eyes, small stature, a slightly flattened nose. I can, like most of you can, see with one glance if someone has Down syndrome. But I realized in that moment that Katie no longer looks like she has Down syndrome to me - she looks like her mother. And then I realized that Anna C. looks just like her mom, Anna G. looks just like her dad, Darby looks like her grandmother and so on.

The video shoot was scheduled for the first day of Project UP's summer intensive and I briefly met a new boy who was joining us, a tow headed teenager named Zach. On a break from the video shoot, I went into the lobby and noticed a man I didn't know standing with several other people. He could have been, like the other people around him, a ticket buyer waiting for help from our box office staff; or he could have been someone coming for a meeting with a staff member. But I knew immediately that he was Zach's father because, even though Zach has those physical traits that tell us he has Down syndrome, he is the spitting image of his father.
Austin with Anna G and Peyton at Gala
I introduced myself to his dad, welcoming him to Project UP. His dad looked puzzled and asked how I knew who he was and when I answered, "I knew because Zach looks exactly like you" I saw in his eyes gratitude and relief. I believe that Zach's dad knew from my comment that his son would be safe and happy with us, that we would see Zach for who he is and not for what he has. I shared this story with our Project UP parents during a meeting we had with them and one of the parents said, "Congratulations. You are one of us now." All the parents gave me a standing ovation as their way of welcoming me into their ranks.

I have a son with special needs. I have special needs, and so do Alan and Emma, just like Abbey said. And so do you. My special needs are not manifested in an obvious way when you first meet me, but get to know me and you'll see that I have character flaws, personality quirks, behavioral issues that interfere with my ability to be my best, accomplish all that I can, function in the world without conflict. We will all spend our lifetimes struggling to overcome our special needs in one way or another. Maybe we won't be able to sustain a marriage or hold down a good job. Maybe we won't be able to work well with others, be an effective parent or be a good friend to others. There are a myriad of ways that we all struggle with whatever disability we have, but make no mistake - if you are human, you have disabilities.

Austin is doing exactly as he's supposed to right now, attending meetings and taking it one day at a time. He is fully committed to remaining clean and sober. His special need may present challenges for him throughout his life, but like the kids in JSAP, he is learning to accept himself for who he is, not what he has been diagnosed with. Just like my students, Austin will overcome his special needs by accepting that he's powerless to change them but instead must work to keep them from limiting his life experience. I have every reason to believe that my precious son is back and will move forward in his life in a positive way to achieve his dreams for himself. I can say that today Austin is happy...something I haven't been able to say about him for years.

It is my hope that by incorporating people with special needs into our society, offering them opportunities to engage in our communities more completely, we will all begin to realize that Abbey's theory is correct. I am grateful to Abbey for teaching me that having special needs is part of the human condition and, like Abbey, I will have to work for the rest of my life to overcome mine.
Austin and Anna G dancing at Dizzy Feet Foundation Gala

Wednesday, August 7, 2013

Huntsville's Best Dance Studios

Way back in the dark ages, I was a dancer. I danced through college and until I was 32, I was a dance teacher as a second job at many different dance organizations from Montgomery to Huntsville. In 1992, I hung up my tap shoes for good.

Today, I leave the actual dance instruction in the capable hands of Hayley Henderson, Artistic Director of The Johnny Stallings Arts Program (a title she will hold forever), and Melissa Reynolds, Merrimack Hall's Programs and Operations Director.
Melissa Reynolds, Katie and Hayley Henderson backstage with Nigel Lythgoe
Through our Annual Evening of Dance and our various master classes with visiting guest artists, I have the privilege of working with most of the dance educators and choreographers in our area and relish the time I get to spend with young dancers from organizations across north Alabama who volunteer with our program. So, even though I'm not actively teaching anymore, I have a sort of "birds eye view" on our dance community. Because of this, I'm often asked by parents where to send their kids for dance education.

Hayley started working at Merrimack Hall in 2008 and worked hand-in-hand with me on every phase of the development of The Johnny Stallings Arts Program. In 2012, she realized her personal dream of opening her own dance studio - Element Huntsville. She continues to be involved with Project UP as a faculty member - we will never let go of her and she couldn't bear to leave the program or the kids. After only one year of business, she has racked up quite an impressive list of awards at competitions (including having the National Teen Solo Champion, Haleigh Briggs!) and has an outstanding faculty and class line up. 

While Hayley will always be number one in my heart, I have a deep and abiding respect and admiration for every dance organization in Huntsville that is involved with us. When you look at the roster of our volunteers, you will see they come to us from every group you can think of...Huntsville Ballet Company, Alabama Youth Ballet, Allegro Dance Academy, Grissom High School Dance Department, Lee High School Dance Department, Ann's Studio of Dance, Southern Elegance, NEEMA, Southern Sass, Valley Dance Theatre, Southern Sensations, Steps of Faith, Dance Theatre of Huntsville and West Main Studios. All of these organizations have participated in our Evening of Dance, a major fund raiser for our program, and have encouraged their students to attend the master classes and workshops we offer periodically. All of these organizations provide excellent dance education from caring faculty! The owners or directors of these groups always put the best interests of their students first, offer high quality instruction and are devoted art educators in every sense of the word.

There are a few dance studios who, along with Element Huntsville, have supported us above and beyond - organizations that share our belief that dance should be open and available to everyone...Heidi Knight School of Dance, Soles, North Alabama Dance Center and The Dance Company (which actually has several students with special needs enrolled in their mainstream dance classes!)

Heidi Knight School of Dance
Heidi, Anna and Kelly at Soles, Barbara Ellen and Mary Katherine at North Alabama, and Beth and Julie at The Dance Company are in the ranks with Hayley in my book, which is saying a lot since Hayley is like a second daughter to me. Element Huntsville, Heidi Knight School of Dance, Soles, North Alabama Dance Center and The Dance Company have hosted fund raisers for us, donated their personal money to us, invited us to perform in their annual recitals, dedicated their recitals to our students and more, teaching the young people they are working with to give back, to share their talents and to care about those kids in our community who are routinely marginalized.
Element Huntsville


Our theatre is about collaboration, support and community among dancers. We want to work with organizations that share our passion for offering access to dance, not with people who only want to promote themselves. I've tried to create a community of support for dancers, choreographers and dance educators through our organization and
North Alabama Dance Center
do not welcome anyone who doesn't share this attitude.

Some of the dance organizations that support Merrimack Hall and The Johnny Stallings Arts Program are involved in competitive dance. They may go head-to-head with each other when they are at competitions, but when they are here, they are part of a network of dancers who are serving the greater good, increasing awareness in and interest in the art of dance and serving people with special needs. The dance community comes together as one at Merrimack Hall and I think everyone involved benefits. It is an honor to host master classes and workshops for dancers, it is a privilege to see kids and adults from across the region join together in their love of dance and to witness their dedication to the art form. For their unified support of Merrimack Hall, I will be forever indebted and grateful.

I believe that the arts should be open to everyone. I have focused Merrimack Hall's efforts on providing access to the arts to people with special needs. I am convinced that the young performers who volunteer with our program are benefitting as much, if not more, than the students they support. Working with kids who have special needs and facilitating their participation in the arts, especially dance, is teaching "typical" kids the important lessons of acceptance and understanding...by working with our kids, the teens who volunteer with us learn there is no such things as "different" or "normal."
Soles

The Dance Company
When you are searching for a dance studio for your child, you will consider many factors - location, class schedule, faculty, tuition, genre they specialize in and others. But I suggest you should add one more factor to your list - look for a studio that is involved with Merrimack Hall and The Johnny Stallings Arts Programs. Those are the studios that are molding young leaders, encouraging community involvement and teaching students that dance is about much more than winning awards at dance competitions. The studios that support Merrimack Hall are offering professional, artful dance instruction and are molding beautiful dancers...and emerging community leaders and philanthropists. 

Saturday, August 3, 2013

Welcome Home

Welcoming Committee at the Huntsville Airport!


What a welcome we received at the Huntsville International Airport at 11:45 p.m. last Sunday! How incredible...thanks to Linda Detweiler, Toni Roth, June Morgan, and some true-blue Merrimackers who stayed up very late to greet our kids! It was a welcome that represented the community support of our trip...hundreds of people donated to help defray the expenses, hundreds followed our facebook posts and this blog, hundreds followed the excellent local media coverage of our exciting adventure. It meant the world to all of us to see those smiling faces after such a long day of travel.

Connor's mom, Amie, was in special need of that warm welcome. Seems there was a very rude passenger on our final flight into Huntsville...some witchy woman who, even though I'm sure was exhausted from her travels, chose to comment rudely on Connor's behavior as he waited to depart the airplane. Connor did nothing wrong - at all - but evidently this witch thought he was invading her space or something. She snapped rudely at him to get out of her way. Amie waited until everyone was off the airplane and, when she noticed the woman waiting outside the restroom, Amie decided she couldn't let the woman's comments pass. She told her that Connor has special needs - to which the woman replied, "Then as his mother, you should work with him more." What a witch. I wish I could find out who she was - all Amie knows is her physical description (small, middle-aged, well-dressed Asian-American woman - anyone who knows who she might have been, arriving on Sunday, July 28 on Delta flight 1655 from Atlanta at 11:30 p.m., let me know!).

Amie needed the warm welcome our friends had for us. I'm sure it wasn't the first time that someone has spoken harshly, or stared, or questioned Amie about Connor.
Autism, wherever it falls on the spectrum,  has many hallmarks that can be recognized but most people with autism do not have any physical markers that make them appear "different." I wonder if the woman on the plane would have snapped at one of the kids with Down syndrome, a condition that's more obvious to recognize. With 1 in 88 children being diagnosed with autism, people like that witch on the airplane need to get educated and show some compassion to people on the autism spectrum and their families.

Three years ago, I took one of our students on an outing and encountered a similar situation. I've never really told anyone what happened that day - because I have always been ashamed of the way I reacted. But after Amie told me last night what happened on the airplane, I decided...what the hell? I'm gonna tell everyone who reads this blog exactly what I said to one really fat, ugly, redneck woman and her equally unattractive daughter who appeared to be around 10-yeaers-old - they looked like Honey Boo Boo and her mother.

The student I was with was in a wheelchair - a darling 9-year-old at the time. We had been to the Build-A-Bear store and were waiting in a long line at Red Robin to be seated for lunch. The child was showing anyone who would look the bear she had made, telling them what she had named it. The aforementioned Honey Boo Boo Momma was in front of us in line and while other people were warmly greeting my student and commenting on her bear, she kept her back to us and pulled her Honey Boo Boo child closer to her. My student reached out and patted Honey Boo Boo Momma on the arm, saying, "Would you like to see my bear?" Honey Boo Boo Momma turned around, looked at my student with utter disgust and disdain, and said, "No, I would not!" She turned back around, putting Honey Boo Boo in front of her - I guess to shield her from the horrible sight of a child in a wheelchair?

The hostess and the other people waiting in line heard and saw all of this - several people stepped into my student and began to exclaim even more enthusiastically over her bear, to make up for the horrendous woman. I couldn't take it, so I stepped up beside the woman and said to her, "Excuse me. But we don't have anything back here that's contagious, so you don't need to shield your fat daughter from us. You should, however, think about taking her somewhere for lunch besides Red Robin, cause she looks like she could stand to lose a few." The hostess laughed out loud and proceeded to seat everyone else in line ahead of Honey Boo Boo and her mother, leaving them to wait until the last person in line was seated. I never looked back at that woman, and told my student not to either. My student said, "Don't worry, Miss Debra. I'm used to stuff like that." I didn't know what was worse - the way the woman acted or the fact that a 9-year-old told me she was used to being treated like that.

Well, we were treated like royalty when we arrived home. I didn't see a welcoming committee for the witch on our plane and I hope she had a hard time laying her head on her pillow that night. Maybe she said a prayer asking for forgiveness for being cruel and hateful to a child but she probably didn't. People like her don't have a conscience, or an awareness of how their words can hurt innocent families. And people like her don't deserve another word of consideration - in this blog or in life in general.

So, thank you again to our wonderful supporters who shared the journey with us and welcomed us home with open arms!

Anna C, Anna G, Zahra, Anna Ryane, Katie
Anna C and Zahra

Improvisation - A Way of Life for Dancers

According to Websters, improvise means to invent, compose or perform with little or no preparation or to make and provide from available materials.

According to dancers, to improvise is to turn on music and let it take your body wherever the rhythm leads you...or wherever your emotions lead you. We include improvisation time in each of our dance classes, as it helps with so many facets of movement and is a very liberating thing to do in an art form that is normally taught in a highly structured manner.

I've often said that teaching dance to kids or adults with special needs is no different than teaching it to anyone else, but there are certain things we have learned to factor in when teaching our classes. Our students thrive on structure - then again, so do most people, so strike that out as a difference! But some of our students may not be quite as quick to adapt as other people are, some of them thrive on a set-in-stone routine and variables to that routine can create issues for them.

"Change the World" was choreographed around a bench. As with any dance piece, spacing was critical in "Change the World" - the spacing of the dancers in context to each other, in relation to the bench and in relation to their place on the bench when they were sitting on dancing on it. Each kid who actually sat on or danced on the bench knew precisely where on that bench they had to be - we rehearsed it over and over. We had little issues with spacing on the bench...Anna G and Anna C start the dance off sitting on the bench with their backs to each other and their knees drawn up to their chests; Anna G frequently forgets that she has to split the middle with Anna C and doesn't leave her enough room. Carolyn, Katie and Connor or Zach have to sit side by side on the bench and sometimes they don't space themselves out well enough to leave room for Katie, the last one to take a seat. Peyton has to do a cartwheel off of the bench, has to do an aerial coming toward the bench and land right beside it and Haleigh has to run the length of the bench and land in Peyton's arms for an incredible lift - spacing is everything on each of these moves.

When we were invited on July 11 to perform in LA on July 25, we were assured that the prop department would find a bench exactly like ours.
Our bench
We sent photos and measurements of our bench and expected to find one just like it when we arrived at the theatre. We thought we might even get the Travis Wall/Mia Michaels bench but alas, when we arrived at the theatre, we were shown a rickety wooden bench with slats that were loose and that couldn't hold any weight at all.

At our first rehearsal, we didn't use the bench other than as a prop to plan spacing around. They prop department promised a better bench for Saturday morning's rehearsal. But all they did for Saturday morning was bolt down the slats on the bench, which did nothing to make it more usable as something for a dancer to run down, stand on and leap off of. So, as dancers do, we improvised.

We found a quilted leather bench in the lobby of the theatre and asked it we could use it - it was three times as long as the bench we had used, but it was the best we could find.
Anna C and Lauren in the recital
Suddenly, all those hours of rehearsing precisely where the Project UP kids should position themselves on the bench went out the window and we panicked just a bit, remembering how very uncomfortable our five kids are with the notion of changes to their dance routine. They wanted to do their dance exactly as it had been rehearsed - no deviations to the rehearsals were expected by the Project UP kids.

I was worried...would they be able to re-space themselves on a prop so much larger than the one they were used to? As is usually the case, I worried for nothing. Our kids, pros that they are, handled the different bench without a problem - even when, in the actual performance, Peyton misjudged the distance to the bench when he did his aerial and ended up behind it instead of in front of it; he improvised a really cool slide down the length of the bench to end up where he needed to be.

People with special needs are sold-short and underestimated all the time - even by me, someone who works with them and loves them. Just because they may need more time to adjust to changes doesn't mean they can't. There hasn't been one challenge we've put in front of our kids that they haven't mastered - ever. They are capable of improvising as quickly as the rest of us are...give them a chance and they'll prove it to you!

The performing arts - especially dance - is proving to be excellent therapy for people with special needs. It gives them a chance to express themselves, be part of a team and enjoy the thrill of an appreciative audience. But more than that, it gives them a chance to think on their feet, to experience situations that challenge them so that when they accomplish the challenge, their self-confidence is increased...which translates to so many other aspect of their lives. I'm no behavioral therapist, but I think Elianna's dad is right when he says our program is "therapy in disguise."

Now that I really think about it, improvisation is a way of life for people with special needs. They have to improvise coping skills to overcome the barriers their conditions present them with so that they can navigate a world that isn't designed to accommodate them very well. Think about all the ways they have to improvise...in their communications with others, in the way they adapt in social situations, in the way they work in the classroom...literally in every aspect of their lives, they have to improvise to get where they want to go. As a society, we should work harder to eliminate those barriers that cause them to have to improvise so much...but we should also learn from people with special needs how to improvise better ourselves...how to make the most of what we have and invent, compose or create something from whatever we have available to us. Like I always say, I learn more from people who society tells us are "less than" than I've ever learned from anyone who is "normal!"

Thursday, August 1, 2013

You Get What You Give...and Then Some!

When Coach Gene Stallings came to Merrimack Hall in 2009, he asked me, "Who are all these teenagers running around here?" When I explained they were our volunteers, he was amazed. He told me he had never seen a program that had our volunteer element and that he was sure our program was changing our volunteers as much as it was changing our students. Of course, I agree with him but sometimes, I take it for granted that we have so many remarkable kids who volunteer with us. I don't take THEM for granted, but I take it for granted that there are lots of people in the world who want to help others.
Decorian and Olivia in holiday show
When I really think about it, it's remarkable that we've been able to recruit, train and retain hundreds of teenagers over the past five years - kids who have given hours and hours of service to our students.

The five typical dancers in "Change the World" are all amazing dancers and they represented themselves, and their teacher Hayley Henderson, extremely well in LA. But they were also representing all of the teens who have given their time, talents and their heart to our kids. I wish every volunteer could have gone with us because each one of them deserves the sort of opportunity that our trip to LA offered young dancers. Even though they didn't get to make the trip, I'm confident something wonderful will come to each of them because when you do something good for someone else for purely unselfish reasons, it always comes back to you.

Peyton, Haleigh, Shelby, Sarah Katherine and Erika started volunteering with us three years ago. When they signed up, none of them expected to get anything personal from their involvement. Some of them came to their first class with a bit of trepidation...they had no experience being around kids with special needs and weren't quite sure what to expect. It never takes more than one or two classes for our volunteers to get "hooked." These are teenagers who love the arts and love the feeling they get from sharing the arts with kids who are routinely denied access to mainstream arts activities. And while volunteering with us is, for the most part, a fun experience, each of our volunteers has encountered things over the past five years that may have been more than they bargained for...toileting issues, temper tantrums, kids who love to try to "escape" down the elevator just for giggles which causes their volunteer to spend class time running up and down our steps trying to catch up! No matter what the small challenges may be presented in a weekly class, the volunteers keep coming back...week after week.
Shelby and Anna G
And what kills my  heart the most is when we have a performance. The volunteers are all performers themselves, trained to stand in the spotlight. Yet, when our kids take the stage, they wear all black, get down on their knees and offer the sort of behind the scenes support our kids need to fully participate. The volunteers put themselves in the background and do whatever they need to so that our students can shine as the stars they are.

Shelby is one extraordinary example. Only 13, we agreed to let her start volunteering at the ripe old age of 12 because she really wanted to, Hayley wanted her to and she was struggling to cope with her father's battle with leukemia. Her father passed away during our summer camp last year but Shelby continued to attend camp each morning - she didn't want to let her student down and I'm sure the joy our children find in the arts helped to soothe her aching heart. The universe works in strange ways sometimes - our performance in LA was on July 27, which happened to be the one year anniversary of Shelby's father's passing. I hope that dancing in LA in that incredible show allowed Shelby to replace some horrendous memories with some good ones.

So even though they expected nothing, the five dancers in "Change the World" got an opportunity that dancers dream of having. They can write on their dance resume that they performed in Nigel Lythgoe's Celebration of Dance at the Music Center, that they were directed by Jeff Thacker and Adam Shankman. Given that Nigel said our piece made him "cry like a baby," I'm sure that when any of them choose to audition for "So You Think You Can Dance,"


Change the World with Twitch and Allison
all they will have to do is tell Nigel they danced in "Change the World" and they'll be through to Vegas immediately.

Merrimack Hall is proud of our record of giving teens the chance to learn the value of volunteer service and we are proud of all the teens who have joined us on our journey to open doors to the arts for kids with special needs. We couldn't have done it without them, that's for sure. And somewhere in their futures will be a reward for each of them for their sacrifices on behalf of kids with special needs. My reward will be seeing our students continue to flourish and grow and to watch from the sidelines as our volunteers achieve all of their dreams!


Wednesday, July 31, 2013

Everything I Need to Know to Have a Happy Life I Learned on a Trip to LA

Do you want to know the secrets to having a happy life? All you have to do is spend four days on a trip with five kids with special needs...they have all the answers.

It's really simple to "live your best life," as Oprah says, if you only follow the example my students showed me this weekend. Here are the 10 things I learned that, if implemented in our lives, will make us all happier:

1.  Never hurry - We tried to hurry Katie to our first rehearsal and the result was a complete and total come-apart. As all of us tried to calm her down, she said, "You shouldn't have rushed me." She's right. There had been no reason for us to hurry her.
Dylan takes her time
We should plan our activities well enough that we don't have to hurry and sometimes, we just might have to be late...the world won't fall apart.

2.  Ask for help - Us "normal" folks are too prideful to ask for help. We think we have all the answers, we don't want others to know we may not have it all together, we view asking for help as a weakness. My students know when to ask for help and they don't mind accepting it.
Anna C gets help with make-up
Whether it's opening a ketchup packet, tying their shoes or getting their hair combed, if they need help, they ask for it.

3.  No is a complete sentence - There are many times when our students tell us "no" and sometimes we try to persuade them to say "yes." Most of the time, when a child with special needs tells me "no," they mean no...not maybe, not later...they mean no! They don't overcommit themselves, promise things they can't deliver, agree to do things they don't really want to do. They just way "no" without justification, without explanation and without hesitation. Say "no" more often to those things you don't really have your heart in and you'll be amazed at how much lighter you feel.

4.  Know when you need a moment to yourself - After lunch on Saturday, Anna C told me that she needed a nap. As Katie was collecting herself after her meltdown, she said, "I just need a minute alone." We go to hard, we push ourselves, we do too much, we don't take naps. Sometimes, we need to recognize when we need a moment for ourselves.

5. Express your feelings and be excited about the small stuff - We play guessing games with each other. We don't say what we really feel or feel what we say. When Anna G was gripped with stage fright right before "Change the World" was to go on, she didn't hold it in. She wasn't ashamed to say, "I scared." She told everyone she was scared and told them why - there were way too many people in that audience for Anna G. Carolyn talked about how much she missed Zach several times. Due to his father's emergency heart surgery, Zach wasn't able to make the trip. Carolyn didn't hold in her feelings or worry that it would be inappropriate to say how she felt - she missed Zach and she said so. Anna G didn't think it was a sign of weakness to admit she was scared. If we all expressed our feelings - good or bad - more often, there would surely be fewer people on anti-depressants!

Another thing our students do is greet you with exuberant enthusiasm - even if its only been 15 minutes since they last saw you. Anna G told me she missed me when we'd only been away from each other for about 5 minutes and each time we met up with each other, all of our students acted like it was the reunion of the century - now that makes a person feel wonderful!
Nathan is excited over his trophy
And they were excited about everything...the burritos we had for lunch, the movie stars we met, the little tram that ran outside our hotel...it didn't matter what it was, they were excited about it and expressed that excitement. It's contagious - just like being around someone who complains all the time can make you feel negative, being around someone who is excited about life can make you feel excited too, even when you aren't (I wasn't too excited about the burritos at lunch but when everyone else was acting like we were in a five star restaurant, it made me enjoy them more).

6.  Hold hands with someone often - Hugs are great but they are more impermanent than holding hands. Our students reach for our hands all the time - for support, for help, for comfort and just for fun. I held hands at one time or another with all five of the kids who went to LA and sadly, I never held hands with any of the five typical kids who were in our dance piece. I plan to hold hands with them the next time I see them! Holding hands makes you feel connected to another person and it puts a spring in your step to know someone you care about is connected to you.
Hugs and hand-holding are the best
I wish I had held hands with the Element dancers, with Hayley, with my kids, with Alan more while I was on the trip. From now on, I'm going to remember how very lovely it is to hold hands.

7.  Support others when they are down - It's easy to look the other way when someone is hurting. It's simpler to not get involved when someone is having a problem. My students don't take the easy way out. If someone is upset, or angry, or sad my students ask, "What's wrong?" And they listen to your answer. They offer simple condolences, like, "It will be okay," or "I love you" and more often than not, that's all a person needs to hear when they are feeling bad. Nothing can make us feel better than helping someone else - no matter what bad things are going in your own life, supporting someone else usually puts your own problems into perspective.

8.  Accept compliments and believe them - We told all 10 dancers that they were stars, they rocked it out, they brought down the house, they are magnificent dancers. Do you know who believed us? The five kids with special needs. Four of the five typical dancers deflected compliments, said, "Thank you, but I messed up," or "Thank you but I'm not as great as those other dancers" or some similar remark. Why are we programmed to ignore compliments? Because we don't want to get big-headed and egotistic? My students don't have one ounce of ego in them but they believe people who give them compliments. They believe they are beautiful, they believe they are stars, they believe they have done their best every time they dance. They don't bog themselves down with self-doubt or envy or jealousy - they love themselves, just the way we all should love ourselves. Peyton was the only typical dancer who didn't deflect my compliment - when I said to him, "You know that was your personal best...you've never danced that fantastic in your life," he answered with a grin, "I felt it." Good for Peyton that he recognized he was great Saturday night...he's great all the time in my book!

9.  Believe in yourself - Would you have enough courage and belief in yourself to try to dance if you couldn't walk? I know I wouldn't. But I have students who do - kids who cannot walk but who believe in themselves enough to enroll in a dance class.
Elianna in spring recital
I asked Elianna once, "What makes you love dancing so much?" She answered, "I love it because I never got to try it before...I just wanted the chance to try." That takes a tremendous amount of belief in yourself. When I think of Anna G, Anna C, Katie, Connor and Carolyn taking the stage in front of 3,100 people, I'm blown away by their belief in themselves. At the first rehearsal, they took my hand, followed me into the theatre and believed in themselves enough to get on that huge stage and perform for Nigel Lythgoe, Adam Shankman and Jeff Thacker...at the next rehearsal, they performed in front of some of the most talented dancers in the world and at the show, they didn't exhibit one ounce of self-doubt. If they can believe in themselves - kids who are told every day that they aren't "normal," aren't "good enough," aren't "smart enough," - then why can't you and I believe in ourselves that way?

10. If you love someone, tell them often - Anna G, Anna C and Katie told me they loved me at least ten times every day. Connor and Carolyn may not have said, "I love you," but they held my hand, hugged me, sat by me, smiled at me and thanked me constantly. I know those five kids love me because they tell me often. I tell my kids and my husband that I love them every day but even if I said it 50 times a day, it wouldn't be enough.

The more time I spend with people who have special needs, the more I see that Alan's right...they are the way God intended us all to be and we are the ones who are "different."

I'd love to hear from you about what you've learned from people with special needs! Please leave a comment on this blog and let's start a dialogue!

Tuesday, July 30, 2013

More favorite moments

I'm starting with a shameless plug...I have written a book about my experiences in starting our program and working with people with special needs. One of the things that will help me snag a literary agent is having a big following on my blog. All you have to do is click on the "Join this site" button on the blog page to follow me. I need - and appreciate - your support!

Now, for ore reflections on our trip to LA!

Anna G wasn't the star of the show...all 10 of our dancers won over hearts and minds.
Anna with Mary Murphy
But Anna G was the only one of the Project UP dancers who attended the entire black tie dinner following our performance. Anna C went to the dinner too, but after the meal was served, she was exhausted and decided to go back to the hotel with her mom. Anna G, however, was up for a party. And party she did!
Anna with Chita Rivera

When all the stars of So You Think You Can Dance and Dancing With The Stars took the dance floor for a dance battle, we managed to get on the front row surrounding the dance floor. What a battle it was - ballroom dancers, ballerinas, tap dancers, hip hop dancers - every genre of professional dancer doing their thing, each one more incredible than the one before. When Christopher Scott pulled Anna out of the crowd to dance with him, everyone erupted in screams and claps, cheering Anna on as she pumped, shimmied, twerked and shagged with the biggest choreographer in the industry. Then she danced with Twitch to the same rousing response. 

There were so many memorable moments - some captured in photos and some only in our minds. Ashley's favorite memory was walking into the dinner with Layne, Anna C and Anna G. Ashley and Layne walked behind the girls as they entered the room.
Anna and Layne with Christina Applegate
As soon as the girls walked in where everyone was already seated for dinner, people from one end of the room to the other noticed them. Ashley said they were greeted with smiles, waves and congratulations from everyone they walked past - in a room full of stars, people like Jane Lynch and Christina Applegate treated our girls like the stars they are.

Melissa's favorite moment was being backstage, watching from the wings as our kids took the stage. She said she was trying to watch our kids but also look out into the audience to gauge their reaction. Jane Lynch was seated on the front row, as she was presenting an award during the show. Melissa had a straight line of site to her and said that as soon as the music started, Jane leaned forward, rested her arms on her thighs and watched with intense concentration. And soon, Melissa saw tears streaming down Jane Lynch's face. Now that's a moment!

My favorite moment was probably when we met up with the Project UP parents in the theatre lobby after the performance. They were all beaming with pride and more elated than they've probably ever been. These are parents of children who are routinely marginalized, overlooked and left out. Their children are denied the opportunity to participate in many things. Their children have challenges that could limit their life experiences and face barriers that prevent them from doing a lot of the things they would like to do.
Alisa, Sarah, Jane, me, Amie, Lori, David, Diane and Layne
Saturday night, their kids took the stage like professionals, wowed the crowd, received the longest of the 3 standing ovations of the night and remained on the stage with Nigel and Adam, grinning from ear to ear. How many people could actually take the stage and perform in front of 3,100 people? How many of us would be too scared or intimidated to share the bill with professional dancers of every genre? "Typical" people like me have way too many hang-ups, are way too self-absorbed and think way too much about themselves to rise to the sorts of challenges our students face every day. I am constantly amazed at the parents' resilience and am reminded of words Coach Gene Stallings said when he visited Merrimack Hall in 2009. He said, "For years after Johnny was born, I prayed to God to change Johnny. And one day I realized that God hadn't changed Johnny...God had changed me." I'm sure our parents would agree that having a child with special needs has made each of them a better person.

More blogs to follow!