Eight Ways People With Special Needs Are Better Than Me

As I prepared to post this, I thought about the “Joy in the Journey” that I’ve experienced because of my friends with special needs. If you love, “Welcome to Holland,” please watch our dance interpretation of Emily Perl Kingsley’s powerful words:

 

To My Friends With Special Needs:

I usually write about you but I decided it was time that I write to you instead. I want all 503 of you, whether you’re three or sixty-five, whether I’ve known you for a few months or for years, to know that I see the differences in us.

I see how we conduct ourselves and I find your way to be far superior to mine. I want you to know that I’m trying to be a better person by following your example. I’m making progress, little by little…day by day. When you’re as old – and as flawed – as I am, it takes a minute.

Here are just eight of the things that make you a better person than me and that I am trying to change:

1. The way you treat me is how I should treat other people. You accept me exactly as I am. You never judge me and when I let you down, you forgive me completely.  When I do something right, you celebrate and when I’m wrong, you tell me so…and then you always give me a second chance or a third chance or as many chances as I need.

The way I treat other people? Let’s just say I’ve got some work to do.

The Connection in Concert

The Connection in Concert

2. You don’t let negative emotions define your life. People who don’t know you the way I do may think that you are always happy or that you don’t experience the whole range of human emotions in the same way “normal” people do. But I know that you hurt, just like me. I know you feel frustration and disappointment, fear and anger, shame and guilt, heartbreak and bitterness. The difference between us is that you don’t let these negatives emotions dominate you.

I’m bogged down by years of emotional baggage. I avoid trying new things because I’m afraid to fail. I throw myself pity parties on a regular basis. I worry what others think of me. I sometimes do things just because my ego needs to be bolstered or because I want to win someone’s approval.

By contrast, you may be afraid to fail but you try anyway. You don’t let the opinions of others stop you from doing something you want to do. You are constantly underestimated by others, marginalized by our society and left out of things the rest of us take for granted. You don’t allow these injustices to get you down…you soldier on, usually with a smile on your face.

Now, I don’t mean to infantilize you or make light of what I know is your desire to be accepted. You feel every slight, you are aware of every stare and insult, and sometimes, it must be more than you can stand. But you choose to accept the challenges life has sent with grace and dignity. You could make the choice I make and allow negatives to inhibit you but thankfully, you don’t.

And you do not know how to feel sorry for yourself…that’s just not your style.

Project UP rehearsal

Project UP rehearsal

3. You willingly display your vulnerability. Some of you are plagued by doubts and worries or live with intense anxiety. You may not like to be touched or you may not be able to tolerate changes in your routine.

When I’m anxious or worried or overwhelmed, I retreat and wall myself off. I put up my defenses and resist anyone who tries to encourage me. “I’m fine,” I say to people who ask what’s wrong, or “Nothing,” I say to loved ones who wonder what’s bothering me.

Unlike me, you’re not ashamed to ask for help. You are willing to admit your insecurities. I spend my time trying to hide mine.

4. You understand that words are often the very thing that prevents us from really communicating with each other.

Some of you are not able to speak but you communicate much better than I do.

I talk all the time (mostly about myself in one form or another) and yet, my communication with people is often guarded and cynical. I am frequently mistrustful of the intentions of others.

For you, the absence of words means that you communicate with your eyes, your hands, your movements, your heart. You know that words are not a requisite for connecting with others.

5. You say what you mean and you mean what you say. When I first got to know you, I found it disarming that you are so utterly honest and so totally literal and transparent. You have no concept of insincerity or sarcasm or anything other than complete authenticity. You do not have the capacity to be disingenuous.

I am manipulative. I’m not afraid to throw my weight around or to use intimidation if I think its necessary. My own self-interest is of paramount importance to me. You don’t realize this about me – my duplicity and selfishness – and I hope you never do because I couldn’t stand for you to be disappointed in me.

6. You don’t understand recriminations or blame or fault-finding. You understand forgiveness.You often get angry, at yourself or at others or at the unfairness of life in general, but you express your anger and then…you’re over it.

I can get mad quicker and stay mad longer than anyone I know. I’m still holding onto grudges against people for perceived slights from decades ago.

You get your anger out and then you move on…quickly and without any fuss.

Nathan at NRG Dance Convention in Atlanta

Nathan at NRG Dance Convention in Atlanta

7. You do not define yourself by your success…or by your failures. When I accomplish something, I boast. Maybe not out loud, but I post on social media or I let that inner voice in my head tell me that I’m a big deal.  I’m too eager to tout my credentials, show off my resume, display my awards.

Nothing I accomplish comes close to the things I’ve seen you achieve – first steps when when doctors said you would never walk, words that therapists said you’d never speak, challenging dance combinations and songs that you master.

You are competitive and enjoy a good standing ovation or pat on the back. When you accomplish something, you celebrate…with gusto. But after the celebration is over, you just move on to the next challenge.

8. You understand that it’s better to happy than it is to be right. I hate to be wrong and I am reluctant to admit I don’t have all the answers. I want to have the last word.

You are perfectly comfortable saying, “I don’t know.” There are only three phrases you use as the “last word” and they are “I’m sorry” or “I forgive you” or “We disagree but I love you anyway.”

Samuel in "Christmas in the City"

Samuel in “Christmas in the City”

Thank you for teaching me these lessons. And for giving me as many chances as I need to get it right. Be patient with me…this is gonna take a while!

With all my love,

Debra

 

“Welcome to Holland”… There Is “Joy in the Journey”

Not too long after I created The Johnny Stallings Arts Program, someone directed me to a poem entitled “Welcome to Holland.” The authorized version of the poem is reprinted below, with permission from author Emily Perl Kingsley. I am told that soon after receiving a diagnosis for their child, whether it’s prenatally or at birth or later, parents are told about this poem. Ms. Kingsley has granted permission for the poem to be reprinted thousands times and it has been widely circulated around the world for 35 years.

Because I used to be a dancer, I imagined “Welcome to Holland,”as a dance from the first time I read it. For years, I’ve wanted to set this poem to music and use dance to interpret the powerful emotions it describes. This summer, I decided it was time.

I tracked down Ms. Kingsley and asked for her permission to set this poem to music and was excited and more than a little surprised to learn that no one had ever asked to do this before. One of Alan’s oldest friends, Monroe Jones, (a Grammy@ winning music producer) joined the project as the composer. We lined up sound and lighting engineers and a videographer. Monroe hired a Voice Over artist, Becki Devries, who has a child with special needs. Becki said, “This project was especially powerful for this momma’s heart.” Monroe entitled his original score, “Joy in the Journey.”

Rehearsals began in early December, with five kids with special needs and two typical teenagers cast in the piece. Choreography was created by Hayley Henderson, Emma Jenkins and Melissa Reynolds. As the rehearsals progressed, I knew they had created something special.

“Joy in the Journey” was performed on January 9 and 10 at Merrimack Hall’s Evening of Dance 2014. Audiences responded as expected…with resounding standing ovations and tears. Additional videography was done on Sunday, January 11 and the final result is posted below. I am so proud of Peyton Davis, Haleigh Briggs, Samuel Evers, Jonathan Lee, Robyn Dunn, Sophie Courson and Vivian Wells for their amazing performances.

 

I would never presume to know what its like to walk in the shoes of a parent who unexpectedly finds themselves in Holland but I have heard from hundreds of parents that “Welcome to Holland” puts words to the universal feelings they share and brought them great comfort. As parents accept that their parenting journey has led them into new territory, they tell me the fear and anger they experience are quickly replaced as they realize that Holland is indeed a lovely place to be. They tell me that “Welcome to Holland” is a treasured part of their parenting story.

I don’t have a child with special needs but my journey in parenting my son certainly led me to a land I never planned to visit. There are things about being a parent that all parents share; struggle and triumph, joy and sorrow, disappointment and success. Our children fundamentally change who we are as individuals, as they present us with challenges we didn’t anticipate and as they bring us happiness and fulfillment we can never fully grasp until we get to know the unique people our children are. Whether your child has special needs or not, the words of this poem will resonate in your heart.

I hope that someday, this video will become as widely circulated as the poem itself and will offer hope and encouragement to parents as they begin their journey into Holland. I hope it will bring attention to the success of our program of arts education for people with special needs. I hope that our interpretation of this beloved poem will help parents to see the joy in journey through the beautiful movements of our dancers.

Please share this video with your friends and family, using the hashtag #welcometoholland. Thank you for viewing.

 

Welcome To Holland
by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

No, I’m Not Trying To Be Like Angelina Jolie

Latest information on my preventative mastectomy journey: I’ve now had three consultations at UAB and plans are moving forward. I won’t know anything further until I have a plastic surgery consult about reconstruction later this month. I expect that appointment to result in final preparations and for a surgical date to be set sometime in February or March. I will write about my journey again at that time.

I’m not sure what I thought would happen when I wrote about being positive for the BRCA gene mutation on The Huffington Post but I didn’t expect that over 500,000 people would read my words. I didn’t expect such an outpouring of support and encouragement from people all over the world. And I sure didn’t expect criticism from total strangers or dogmatic pronouncements about my “uninformed” decision.

The first negative comment was a surprise. “You must be trying to be like Angelina Jolie.” Really? Is this a joke?

Angelina Jolie pic

I assure you, I’m not having a preventative mastectomy because I’m trying to be like Angelina!

 

But comments in that same vein continued, along with messages saying “Please read the attached article,” one after another slamming the so-called  “Angelina Effect,” the name given to the increase in the number of women undergoing genetic testing after Mrs. Jolie’s New York Times op-ed, My Medical Choice.

I’ve been sent articles that say Mrs. Jolie’s decision to share her medical choice with the world was somehow connected to an under the table deal with the company who, at the time, owned the patent on the BRCA mutation test (the Supreme Court has since ruled against Myriad Pharmaceuticals and their attempt to patent gene mutations). In messages to me, people called her “stupid,” “foolish,” and “daft” and someone referenced the “questionable lifestyle choices that led to her BRCA mutation.” I’m no expert, but my understanding is there are hereditary mutations and acquired ones, with BRCA 1 and 2 being hereditary…if you have those gene mutations, you inherited them from one of your parents and they’ve been with you since your conception.

One person said in an email, “If Angelina ever actually gets cancer, it will be because she and Billy Bob drank each other’s blood and she used to shoot up heroin, not because she has some gene problem.” Really? Are these real people?

Obviously, I don’t know Angelina Jolie but I do know Billy Bob Thornton and he is one of the most down-to-earth, good ol’ Southern gentlemen I’ve ever met. He’s been a guest in our home and we’ve been to his.

Billy, Teddy Andreadis, Alan and friends around the piano at our house

Billy, Teddy Andreadis, Alan and friends around the piano at our house in 2010.

 

I am confident that he and “Angie” never drank each other’s blood but even if they did, show me the evidence that drinking blood causes cancer, please.

Besides the Angelina Jolie haters, I’ve heard from holistic medicine advocates, those who don’t trust the “medical establishment,” people who believe that all cancer is caused by lifestyle choices and can be prevented or cured by eating a certain herb or root or, I don’t know…clicking your heels together three times while throwing salt over your left shoulder?

People have told me that if I choose preventative mastectomy, I will be mutilating myself for no purpose, that I will be playing directly into the hands of some huge conspiracy between pharmaceutical companies and surgeons, that I will be cutting my life short by the surgery rather than extending it. One person actually wrote me this question: “Without breasts or ovaries, how would you be any different from a man?” Really?

None of these people offered up any credentials but I doubt they are doctors, researchers, genetic scientists or other experts. I’ve personally met with all of the above and while all of them have presented me with options, information about the importance of diet and lifestyle, statistics and concrete evidence, none of them have told me that by eating nothing but turmeric or curry or if I eliminate all dairy products from my diet, I will never get cancer and will live to be 110.

I’m confused about who these people are. The people I’ve heard from who have actually been affected by breast or ovarian cancer, either themselves or through a loved one, and those who are BRCA positive have offered a universal message…do your homework and then make the decision that is best for YOU. They have said things like, “here are resources you should know about” or “here’s what happened to me” or “this is what my wife decided to do” followed by “I hope this information helps you” and “you are not alone” and “thank you for sharing your struggle, as I’m feeling the same emotions.”

Dogmatism is defined by Webster’s as “the tendency to lay down principles as incontrovertibly true, without consideration of evidence or the opinions of others.” People who are dogmatic think just because they believe something, it’s so. The people who have questioned and criticized my choice are absolutely convinced that theirs is the right opinion. But we all know what they say about opinions.

Obviously, I opened myself up to receiving this negative input by writing publicly about my choice and the conflicting emotions I feel about it. I accept that and frankly, have had more than a few cathartic laughing spells as I’ve read the pontifications, proclamations and dire predictions from the people who are so convinced they are right. And maybe they are. I don’t know because I take a pragmatic view.

I chose to share my medical dilemma because I wanted to know if other women in the same position had ever felt the same way. I wanted to know what other women with the BRCA mutation chose to do. I wanted to know what options were available in other communities. I wrote about my feelings because even though I think I’m tough, I’m not as tough as I thought I was. I’ve lived for 28 years with Crohn’s disease and have endured my share of health issues but the thought of electively removing my breasts and the pragmatic reality that I have an enormous risk of developing breast cancer regardless of anything I may change about my lifestyle to prevent that from happening…well, frankly that knowledge brought me to my knees.

I am encouraged, inspired and humbled by the words of support from friends and strangers, by the sharing of personal medical decisions from women around the world, by invitations to join uplifting social media groups where vital information is shared by previvors and people already battling cancer. I might not have sought a third and fourth opinion if I hadn’t written that post and I definitely wouldn’t have been invited to have a two-hour meeting with one of the world’s leading genetic researchers (a post on what I learned in that visit is coming soon).  If the price for all of this insight and advice is a few haters, then I’m happy to pay that price.

As for me trying to “be like Angelina Jolie,” in my humble opinion she seems to be a pretty solid person who uses her resources to address issues that matter to her. That’s what I’m aspiring to do through my organization and The Johnny Stallings Arts Program so maybe I am trying to be like Angelina Jolie.

Next post will be about these folks, not about me!

Next post will be about these folks, not about me!

Which is exactly why the next post you read from me won’t be about my boobs or my medical decisions but will be about something much more important and way more interesting…it will be about the people with special needs who have changed my life.

Jonathan and Vivian are much more interesting than mastectomies!

Jonathan and Vivian are much more interesting than mastectomies!