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The Artist Formerly Known as Severely Autistic: Sam Debold Wows the Crowd at Autism One

Managing Editor's Note: On Saturday night at the Autism One dinner, young Sam Debold turned on the charm (and every tear duct in the room) with his muscial performance. Here is Dr. Andrew Wakefield's introduction of Sam.  You can see Sam's complete performance, including the intro, on the other side of the post jump. Just click down.

Ladies and Gentlemen, I have just a very, very small role tonight and that is to introduce someone that I first met some years ago in Detroit. He’s a Red Wings fan.  And a when I met Sam Debold through my great friend Vicky Debold, his mother, Sam was profoundly autistic.  And back then when I knew very little about this disease, I wondered quite what the prospects for Sam were.  And I’ve been following his progress over the years and Sam has been doing extremely well.

And then I received the other day a YouTube video of Sam which his mother instructed me to watch of Sam playing Hotel California - he’d only just heard it, I believe, for the first time that day and it was one of the most extraordinary things I’d ever seen.  And so it is a great great privilege for me and without any further adieu for me to introduce Sam Debold.

I should just say that Sam is dressed in a way that makes me look under-dressed.  I forgive him for that.  Sam, over to you man.


http://www.youtube.com/watch?v=tDeEtGNNexg&feature=channel_page/

How Long Must We Sing This Song?
Vicky Debold, PhD, RN

In 1983, the band U2 released an album titled War which includes Sunday Bloody Sunday, a song widely considered to be one of the most powerful political protest songs of all times.  For anyone who doesn’t know the song’s history, it captures the anguish of an observer who witnessed Northern Irish civil rights protesters being fired upon by the British army (lyrics below). 

For those of us within the vaccine-injured communities who are fighting on behalf of our children for the basic human right to make voluntary, informed vaccination decisions that are based on sound science rather than ideology, it is a battle.  And it is personal.  Like the victims of the civil war described in Sunday Bloody Sunday, many lives have been lost, our families torn apart, and everyday there’s unbelievable news where indeed, “fact” is fiction and TV becomes reality. 

For anyone fortunate enough to be able to attend this weekend’s outstanding Autism One conference and Saturday night’s dinner, they heard my 11 year-old son, Sam, sing Sunday Bloody Sunday. 

Sam’s story is a common one these days.  He was a healthy, happy, normally developing baby until 15 months-of-age when he experienced a significant physical and social regression after receiving seven vaccines during his well-baby visit.  The following day, he was unable to stand up in his crib, seemed “dazed”, was ataxic and lost interest in walking which lasted for two months, developed chronic diarrhea and progressively lost his ability to speak and all interest in socializing with his family. 

In hindsight, I think he suffered from vaccine-induced ADEM (HERE) but it wasn’t diagnosed or treated.  In 2000, at 3 years-of-age Sam was profoundly autistic, non-verbal and mostly disconnected from the world and his developmental pediatrician told me that he would never be able to go to school and would probably be institutionalized.  Even so, he consistently would come running any time he heard the Jeopardy theme song.  As a result, we started music therapy and that’s how he learned to play piano.  If you’re interested, here's Dr. Wakefield's intro and Sam's first two songs (Hedwig's Theme from Harry Potter and Hotel California):

http://www.youtube.com/watch?v=TQc-Wo6vJGk&feature=channel_page/

And here's Sam's closing, song, "Rhapsody in Blue" by George Gershwin.

http://www.youtube.com/watch?v=Hjry3fAzeuw&feature=channel_page/

Although I’m very proud of Sam’s courage and what he has achieved, I’m even prouder of the autism community and more broadly, the vaccine-injured communities.  Without the support, hard work and dedication of these communities, I doubt Sam would have delivered the amazing performance that he did.  I happen to think that there’s something rather poignant and ironic about an autistic child soulfully wailing, “I can’t close my eyes and make it go away.  How long must we sing this song? How long?” 

In contrast to the song’s lyrics, the vaccine-injured community is heeding the battle call.  And it’s not just the autism community.  As a longtime volunteer for the National Vaccine Information Center (HERE) which has been fighting for vaccine risk awareness and informed consent for nearly three decades and answered thousands of calls from grief-stricken parents the world over including those of previously healthy teenaged girls who are devastated by Gardasil-induced injuries and death, I know that there are many more lining up to for fight for their rights. 

And to all who either deny the existence of “broken bodies strewn across the dead end streets” or claim it is only a coincidence that individuals can be seriously harmed by vaccines --- we know that this is not true.  These are people whom we love and their lives count. 

If this issue is something you care about and would like to hear Sam sing Sunday Bloody Sunday, please come to Washington, DC on October 2–4, 2009 for the upcoming NVIC 4th International Public Conference on Vaccination (HERE)

Sunday Bloody Sunday
U2, 1983

I can’t believe the news today
Oh, I can’t close my eyes and make it go away
How long...
How long must we sing this song?
How long? How long...
(Read the full lyrics HERE.)

Dr. Debold has worked in the health care field for over 25 years and currently works as a consultant performing health services research and policy analysis related to patient safety. She has worked as a health policy analyst for the U.S. Congress, Physician Payment Review Commission, Michigan Health and Safety Coalition, and the Michigan State Commission on Patient Safety. Additionally, she was an Assistant Professor at the University of Michigan and an Associate Professor and Director of the Health Systems Management Program at the University of Detroit Mercy. Her doctoral degree is from the University of Michigan - School of Public Health (Health Services Organization and Policy) and School of Nursing (Health Systems Administration). She was a Regent's Fellow and completed a post-doctoral fellowship in health systems research. She serves as an Executive Board member for The Coalition for SafeMinds.



 

Comments

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bull

I used to be very emotionally disturbed and when coming out of a state of muteness, I behaved very much like an autistic. Rocking, rhyming, twiddling. Of course I am not autistic - I can see what a fabulous thing sam has accomplished. He is able to love and be loved. He's is lucky. I haven't been so lucky. He is not lonely anymore.

Julie

As a warrior mom, I am committed to recovering my son. Some days are harder than others, but when I happened upon this recording of your performance yesterday, it gave ME a booster shot of inspiration that I needed. I will never give up. You are a true INSPIRATION!!

Jamie McGillivary

I am totally speechless! Sam, that was the most amazing thing I think I have every seen :) I always knew you had it in you!! You are a superstar!!!

Ricardo Linares

Hello guys,

I don't have words to say to Sam, his family, and all the people behind the miracle. Oh yes! it's a miracle! one of those made with lot of faith, love and work.
My family has been in this turmoil for 3 years and getting good and happy results. But nothig close to this yet. Not yet.
For me, it had been a pleasure and an great emotion, like those that freeze you, to see Sam in person, but it might be another time.
I was a bit desappointed after listening to the videos, not for Sam of course, but for the background noise of people chating and eating while he was playing, like going out to a pub. I have no doubt it was an unforgetable performance and it seems like after the first tears many were there just enjoying the party. We don't learn, its incredible.
God bless you Sam and continue playing and singing or doing whatever you want to do to open minds, to encourage people like me.
The heaven is yours.

Ricardo Linares

Katie Kelley

Vickie, Bless you and your son. I have watched this everyday and his smile just makes my day!

Dawn Loughborough

Sam, you are a beautiful child. The world is truly blessed to have you here. Thank you Debold family, for being strong, loving and determined and not allowing this child to be dismissed from society.

In the question of Vaccines and Autism, I ask, "Who benefits?"

And I love how you are dressed!! Handsome and dapper! :)

Tawny

Vicky and Sam you are an inspiration to all of us!! The battle for safer vaccines and informed consent is endless and tiring and it takes moments like these to remind us the importance of our work. Thank you, Vicky, for your courage to share Sam's story with the world. Sam, you are a rock star!!

Gatogorra

What a phenomenal family and what a great little musician. Thank you so much for sharing this. That U2 song will forever have new meaning to me.

nhokkanen

Beyond wow! What a talented guy!

Jack

Just awesome. I've long been a fan of U2 (my boys are too) and that song, but now I'll always have an extra reason to enjoy it.

To tie in with Dan's article today; I think it is kids like Sam that will eventually be the story nobody can miss no matter how hard they try, and they'll change the world.

Paula Pebsworth

Sam - We think you totally ROCK! We wish we could be there for your next performance, but if we can't make it are happy that your mom [my sister/aunt] will put it on YouTube for us to watch in South Africa. We are so, so, very proud of you! Do you think you can come jam for us and the baboons? We think they too would think you're awesome. So, what do you think!? WE LOVE YOU! Aunt Paula, Uncle Keith, Abigail & Bryce

Raymond Debold

I am Sam's Grandfather. We watched Sam go from a normal child and then to Autism. His parents were devastated and could not understand why this was happening.they chose to find out why and how to combat this ilness.The Family was 100% behind them.Dave and Vicky never gave up hope. Sam is a great fighter and his love of the whole Family is a blessing. At one time he would not bond with anyone, but now He looks forward to being with us. It took a lot of work from his parents ,but the outcome is well worth the battle. Dont give up hope. There is a person inside that child that wants to get out. Sam we love you
Grandpa and Grandma

Michi Medley

I am a mom to a 3 year old boy, Rob, who is profoundly autistic. My son was vaccine injured by a flu shot that he was given while he was sick with pneumonia. We watched him turn grey and break out in to hives. He was hospitalized for three days. Shortly thereafter he began regressing and losing his words.

When he was officially diagnosed last year, we were told by the doctors to "hope for the best, but expect the worst". My husband and I would not and have not accepted that!

Like Sam, Rob has a gift for music. He cannot talk yet, but he has been humming classical music pieces perfectly to the note since he was 2. He also loves to play the piano, guitar, and drums. We too have decided to try music therapy this summer.

Thank you Sam for encouraging us to keep working hard to recover our son. You are a role model and an inspiration! Whenever my hope is swayed, I intend on watching this video. Perhaps Rob will sing with you one day.

David Debold

I knew Sam would do a great job - he was terrific in practice - and I'm so glad there are recordings for me to watch. I was unable to make it to this performance in Chicago, but more are in the works.

Sam is truly gifted and everyone who had a hand in putting him on the long (and continuing) road to recovery can be very proud. And those who did not think it could be done, well . . . [I'll spare the moderator any need to edit this].

I hope other parents understand that there is hope. It's a very hard path you've been put on, but there is hope. Much of the credit goes to Vicky, who has worked tirelessly on finding the right therapies and other interventions. Thank god that Sam "chose" a mom with a strong medical background and boundless determination. This whole experience has been hard on the whole family, but she deserves special mention.

I look forward to watching Sam follow his dreams and - if music continues to be one of them - blossom into a world class musician. I jokingly refer to him as my more promising retirement plan! I always wanted to quit my day job and become a roadie.

Keep wowing them, Sam. We're behind you every step of the way.

Love,

Dad

Angela Warner

I again don't know what to say. I was there. Sam YOU are AMAZING! I want you to know that I understand why this is a favorite for you to play.

I look forward to meeting you in DC.

Ang

Erika

Sam,
You have no idea the inspiration you have given me to keep going.

Thank you beautiful boy, you are a true gift to our community.

Big "D"

God bless you and your wonderful miracle. Brought tears of joy to me and gave me hope that one day I too will hear the beautiful sound of my own kiddo. Keep up the good work Debold family! You are truly inspiring!

Julie O

To think this miracle of a little boy was at the conference the entire time, and the Tribune instead chose to concentrate on a treatment that the majority of us will likely never use. Shame, shame, shame on them.

Sam and Vicky, such a gift to us all. Just beautiful in so very many ways.

Lisa @ TACA

Dear Debold family & especially Sam,

You couldn't have picked a better song than "Sunday bloody Sunday." It was wonderful to hear you sing & play Sam. Keep up the amazing gift. You are an inspiration.

I was thrilled to be there and see Sam in action. What a lovely gift.

Lisa @ TACA

DadtoAutism

Sam,
Incredible performance and appropriate song as an allegory for our stuggle to help all with your similar plight. I hope to hear more great things from Sam DeBold in the future.

Meg D

I would love to hear Sam sing "Miracle Drug" by U2...it always makes me think of my son. This story and Sam's playing just made my day today!

Teresa Conrick

Being in that room at A1 when Sam played this song was so moving. This particular U2 song has always been one that I compared with our plight --

Sam was awesome and innnocent and loving life when he hit the keys and belted this out. I cried and I think the whole place did. It was electric and I will never forget it.

Vicky Debold

To Media Scholar

I am trying to do that as we speak. It's quite a chore for a non-techie like me to round up old VHS and convert it to DVDs and find suitable clips to upload. Most of this contains memories of a time that I never wanted to witness again.

In the meantime, here is what was recorded on his initial multi-disciplinary neuropsych evaluation on May 11, 2000 (he was 35 months old). This evaluation was done by the best clinicians in the Detroit area - even in 2000 we waited for months for Sam to be evaluated.

FINDINGS: We concur that Sam's current presentation is consistent with an autistic spectrum disorder (299.80). Specifically, Sam evidences the three core criteria required for such a diagnosis. First, he demonstrates qualitative impairment in his social interactions. For example, he rarely spontaneously seeks to share enjoyment with others. He lacks social or emotional reciprocity, and he is developing peer relationships appropriate to his developmental level. Secondly, Sam demonstrates qualitative impairment in communication which is not accompanied by an attempt to compensate through alternative modes of communication such as gesture. Sam's language functioning currently falls at about the 14-16 month level, and he seldom spontaneously uses language communicatively. His receptive understanding is difficult to assess, but we suspect that a lot of language he hears is not meaningful to Sam at this time. Thirdly, there was evidence noted of perservative behavior, although this was not very pronounced during our assessment. Sam's parents report clear perservative interest in spinning wheels on toy cars, pinwheels, fans and noted that one of Sam's favorite toys is a salad spinner. (And so on.)

What's maddening is to go back through reports like these and see that the developmental pediatrician noted our concerns about loose, "stinky" stools (but failed to recognize that Sam had stopped growing the year before) and only recommended a "reduction in fruit juice intake". A colonoscopy done a year later would show that he suffered from substantial inflammatory bowel disease.

I think it is very important that everyone reading this story understand that I do not consider my son to be "recovered" or "cured". He is recovering and it has been a long and arduous journey in which very little of the mainstream medical community (of which I am a part) has helped.

Sargent L Goodchild

Sam is an awesome kid with amazing talent. Yet, there is nothing special about his body that allowed him to make this recovery. The recovery potential that he demonstrates so vividly in these videos is a recovery potential which all children with autism are endowed. Sam, thank you for being a testament to that recovery potential. You are fantastic.

Media Scholar

I think this child's musical talent is truly wonderful. Perhaps if there was something made available in terms of comparative video to demonstrate just how severely affected he was it would certainly lend itself to credibility of whatever treatment is claimed to have successfully recovered this boy.

There are thousands and thousands of truly severely affected children who stand to lose out by the indifference these sort of "recovery" stories create.

Heidi N

Vicky, you did a great job! Thank you so very deeply for being faithful that you could recover your child! I have so much love and appreciation for all on this autism recovery movement! We take a lot of risks, but oh the joys of success. As traumatic as it it to have your children develop autism, the heartfelt sincerity of us all working together to recover them and speak out against the travesty of it all, is an amazing experience!

Kecia

Sam, You are a strong Warrior! Thank you for reminding us that recovery is possible...it's why we continue to fight every single day.
Beautiful job!

Diana Hiiesalu Bain

Vicky, you and Sam are a true gift. I love you both so much. Thank you for being in my life.

Diana & all the Punkies

Twyla

Vicky -
I would love to hear more about your son and his journey out of severe autism. I hope you will write about what you went through to find effective treatments etc.

Our computer's sound is broken, but I hope to order DVDs of A1.

Thanks so much for all the work that you do! Congratulations to your son!

Twyla

K Fuller Yuba City

Mir-a-cle 1.an event or action that apparently contradicts known scientific laws 2. a remarkable thing.
BELIEVE

Denice

Absolutely beautiful!

Thank you Sam and Vicky!

Libby

Vicky,

Watching Sam play at the dinner renewed my spirit to fight for my daughter. We've been in this war for 8 years and I had been beaten down. I could barely get out of bed on some days. Beyond the typical medical and political battles, I had fought against educators year after year that said she was unteachable. I was determined that she would go to college (if she so chose). This last year has been the hardest for us and on most days I found myself saying "she can't" way too often. I didn't know what had happened to me. Burn out I guess.

But then I saw Sam play and I saw my daughter's potential again. I'm ready to fight again. I hope to play Sam's video when times get tough to remind me of the abilities that are waiting to be unlocked.

Thank you so much for sharing your son with us. Thank you Sam.

Michelle, the GF/CF SoccerMom

That was one of my most favorite parts this weekend! If this song doesn't describe what we are going threw, I don't know what does!!! That kid was amazing!!! Thanks for sharing the video!!!

Lisa

Simply Amazing.

RAS

Sam, you never cease to amaze me. Love always from Jack and your other friend in area code 615 (born on August 13).

Andrea

Hey Maurine-

Sure this is a lot more significant than anything on AI. But, as a future American Idol Sam would be able to help get the word out about autism recovery via biomedical treatments.

I can just picture Nancy Snyderman interviewing him and his mom now. LOL

Cathy Jameson

Vicky,

Sam's performance was fantastic Saturday night. The U2 song especially took my breath away--so many lines in the lyrics speak to me personally. Thank you so much for the opportunity to witness the gift Sam is. Our community is truly blessed to have such believers.

Vicky Debold

Thanks for your kind remarks. Here are the links along with the original Hotel California link that got all this started.

http://www.youtube.com/watch?v=G7KElXio2us&feature=channel
http://www.youtube.com/watch?v=tDeEtGNNexg&feature=channel
http://www.youtube.com/watch?v=TQc-Wo6vJGk&feature=channel
http://www.youtube.com/watch?v=Hjry3fAzeuw&feature=related

Vicky

Roger Hatfield

HOPE! is a beautiful thing!
Thank you.

Maurine Meleck

I got them. (sorry i am a bit computer illiterate). Thanks, Sam. You did a terrific job. This is a whole lot more significant than anything on American Idol.
Maurine

AnneS

Great piano playing and great singing! What a joy to listen to!

Andrea

That kid is awesome! Watch out American Idol I see a rising musical star.

Maurine Meleck

I would love to see this video since i couldn't make it to the conference but i cannot view it this way on my computer. is there any other way I can see it, like go to You Tube myself or something??
thanks. i am sure it's wonderful.
maurine

Gayle

Thank you so much for sharing the video of your son Sam singing and playing the piano so wonderfully. He is absolutely adorable, too. I did not expect to cry over my coffee this morning, but your son's music had that effect on me. It gives me, and I am sure many others in our community, such hope to see such a positive and astonishing turnaround in a young child. What a positive start to my day!

Holly M.

What a Bad Dude!

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