I have traveled extensively over the years searching for worthwhile initiatives and like-minded individuals dedicated to the promotion of positive social change. I have been exposed to a number of organizations promising great things (some have, others haven't), yet my conviction to find noteworthy causes and people of similar interests remains uncompromised.
Sometimes my efforts bear little fruit, but then there are moments when effort is compensated handsomely and faith in humanity restored; moments when the long days and late nights all become worth it, when purity and good cause collide.
The author meets Joey Lowenstein and his interpreter as Lorraine Cancro and his mother Roberta Lowenstein look on. Photo: Annie Watt.
I experienced one of these moments recently. A friend and fellow advocate, Lorraine Cancro, MSW, a psychotherapist and executive director of the Global Stress Initiative (GSI), invited me to a gala sponsored by FACES (Finding a Cure for Epilepsy and Seizures).
FACES, affiliated with NYU Langone and its Comprehensive Epilepsy Center, funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.
The gala was held at Chelsea Piers in Manhattan and had over 750 guests in attendance. An inspirational evening that saw Seth Myers of Saturday Night Live (SNL) emcee, bringing wit and a dash of comedy to what is without question a serious illness affecting three million Americans every year, at an estimated $17.6 billion annually.
Adam Pressman, Roberta Lowenstein, Lorraine Cancro, Dr. Sandy Lowe, Jim Luce, Anna Castillo, and Richard Peterson at the N.Y.U. Langone event. Photo: Annie Watt.
The event was an enormous success raising over $4.5 million dollars for life-enhancing programs in cutting-edge research, clinical care, education, awareness programs, and community building initiatives.
FACES Founder Orrin Devinsky, M.D., Professor of Neurology, Neurosurgery and Psychiatry, as well as director of the Comprehensive Epilepsy Center at N.Y.U. Langone Medical Center, explains, "The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. But ultimately, our goal is to find a cure."
FACES Founder Orrin Devinsky, M.D., professor of Neurology, Neurosurgery and Psychiatry, directs the Comprehensive Epilepsy Center at N.Y.U. Langone Medical Center. Photo: Annie Watt.
And as if this were not reason enough to declare my support, I was also there to meet a remarkable young man whom I had previously heard so much about. His name is Joey Lowenstein. He is a 16-year-old with autism. He and his mother, Roberta Lowenstein, a long-time supporter of the FACES organization, were present to support the important work being done by FACES and Joey's doctor, Orin Devinsky, MD.
I met Roberta several months earlier at an event we attended and heard about her son but this was the first time I had heard his story directly.
Diagnosed with autism at the age of 2, Joey -- and Roberta -- have endured much over the years. The most inspiring of which was Joey's recent conquering of a 14-year virtual silence. Unable to communicate through typical speech (or so was thought), Joey had uttered few words through the age of 14.
However, this changed two years ago when Joey's mother, his Rock of Gibraltar, discovered a method of communicating called Rapid Prompting Method (RPM). RPM is an educational platform that utilizes a letter board to help facilitate education and communication. Having tried dozens of therapies over the years nothing could have prepared Roberta for what was coming.
Matthew Kennedy, teacher, with Joey and Roberta Lowenstein. Photo: Annie Watt.
What was previously impossible became possible when Joey began using a letter board to speak. The flood gates of communication had opened (and so had Roberta's tears) outpouring 14 years of 'bottled-up' expression, thoughts concealed, inner fears unheard and hopeful dreams for the future.
Admittedly, my words fall short and any attempt I make to accurately express the significance of what really transpired is futile -- Joey's mother put it best when she said, "it was like a miracle."
It is moments such as these, when I am reminded that there are few forces in the world greater than that which is fueled by a mother's unconditional love. I know that from my own experience.
And though having never been formally taught, Joey could read. He could perform eighth grade math. He can be witty. He can write poetry; possessing a wisdom well beyond his teenage years.
His Rabbi describes Joey as 'an old soul.'
We met during the FACES pre-dinner reception. It was a small group of us and though our encounter was brief, I must admit I was very impressed. It was all small talk until, while saying our 'goodbyes,' Joey -- with swift, sword-like determination of pen upon letter board, caught me off guard. Joey spelled out to me, "Jim please write about how smart I am and that I am studying to pass my GED."
The pen really is mightier than the sword!
Standing: Bob Roth, Adam Pressman, Anna Castillo, Richard Peterson. Seated: Jim Luce, Lorraine Cancro, Sandy Lowe, and Roberta Lowenstein. Photo: Annie Watt.
I have since given considerable thought to what Joey was really asking me that evening and I can not help think just how difficult it must have been to go through life silent, without a voice, for so long. I can't imagine and I won't pretend to. What I can and will do is help Joey's voice be heard.
Autism, a seizure, a 14 year silence, and the struggles of teenage adolescence would likely be too much for the 'average Joe' to bear; but apparently not for the "average" Joey Lowenstein.
Having faced all of life's obstacles head on, Joey is on the brink of doing what was once improbable, and despite little formal education, Joey "is smart enough to pass the GED!"
About a year ago, demonstrating abilities far beyond what anyone (including his mother) could imagine, Joey told his mom he wanted to start a business that would help others with autism find their own voice -- the genesis behind what is now the Joey Lowenstein Foundation (JL Foundation).
Their mission was to help others by way of an 'ANSR' utilizing Athletics, Nutrition, Self-Development and RPM to do so. This was prior to September 2, 2012, when during a return flight home from vacation, a seizure (Joey's only) changed his life and the direction of his Foundation forever.
As is his nature, Joey has taken a positive stance on the matter and recounts when asked, "The seizure really pleasantly came out of nowhere for me to help other people... average guy Joey knows this, seizure research is one of my awareness bringing missions." And there it was.
Finding an "ANSR" for the Joey Lowenstein Foundation was not enough. Apparently, ANSRS were needed -- the final 'S' standing for Seizure Research.
The JL Foundation's mission may have changed slightly since that fateful September day, yet amidst the challenges they face (under Joey's stewardship), the JL Foundation continues to reach beyond the diagnosis of autism and enrich the lives of those affected by helping reveal their 'unspoken' gifts.
The JL Foundation believes this can be accomplished through Athletics, Nutrition, Self-Development, RPM, and, Seizure Research ("ANSRS") with each bridging the gap separating those with autism from their true purpose in life.
So there I was at the Chelsea Pier gala, surrounded by FACES, determined to find a cure for Epilepsy and Seizures and those dedicated to providing ANSRS, helping those with autism find their voice and their purpose.
I could not ask for better company. It isn't often that you find yourself surrounded by boundless optimism and hope for the future. I wish you all could have been there with me to witness this extraordinary evening. For those of you who weren't, please meet the incredible Joey Lowenstein.
With editing from Richard Peterson.
For More Information
FACES (Finding a Cure for Epilepsy & Seizures) | Joey Lowenstein Foundation
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The latest statistics collected from parents show that 1 in 50 children has a diagnosed autism spectrum disorder. But while the condition is common, it's often misunderstood.
Autism Shines, a project that aims to debunk negative myths about ASDs, collects photos and stories to show the world that when we talk about children with autism, we are talking about real kids. Aiden's favorite song is "Twinkle Twinkle Little Star." Lily loves to dance and she's afraid of thunder. Callum flaps for the joy of just being himself.
"As parents, we wanted to show how amazing our kids are and that they are so much more than a label. We also wanted other people with autism to know they are loved and accepted just the way they are," Jessica Watson, who blogs at Four Plus an Angel and is one of the founders of Autism Shines, told HuffPost in an email.
In honor of Autism Awareness Month, view a selection of photos from Autism Shines below. And if you have a child with autism, we invite you to add your own photos to the slideshow by clicking "Add a slide" or emailing us at
with a photo and note about your child.
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In K-12 classrooms everywhere are children at risk for being misunderstood, medically mislabeled, and educationally misplaced. Not limited to one gender, race, ethnicity or socioeconomic group, they could be the children of your neighbors, your friends, your siblings, and even yourself.
These at-risk children are gifted children.
Contrary to common stereotypes, giftedness is not synonymous with high academic achievement. The gifted student archetype, while expected to be a mature classroom leader, does not fit all gifted students. Some are the class clowns, the lonely awkward child in the back row, the troublemaker. Special needs classrooms are where a number of gifted children end up -- their giftedness left unsupported.
Wasting much of their day in unsuitable classrooms, gifted kids may behave in unacceptable ways. Despite giftedness being akin to a special need, funding for it is scarce and the needs of gifted minority and poor are repeatedly and shamefully overlooked. Visual-spatial learners whose learning methods conflict with typical classrooms are also misunderstood. While classrooms need to be academically challenging, for many that also requires sensitivity to cultural, racial and linguistic diversity. Learning strengths, too. Such solutions are not always generally available.
Dr. William H. Smith, former dean of the Karl Menninger School of Psychiatry and Mental Health Sciences, stated, "Giftedness can be confused with some psychiatric disorders, obscure other disorders, and it often needs to be included in treatment planning."
But many gifted children are never identified. Gifted identification is mandated in only 32 states, and funded in fewer. Most teachers receive only minimal instruction on the identification and management of gifted children. The term gifted tends to evoke elitism, and serious attention is rarely paid to gifted children who are other than high achieving.
A prevalent belief persists that one cannot both be gifted yet struggling in school. Many parents also discount giftedness when their children's abilities are uneven or counteracted by other difficulties. Yet some gifted children who have unrecognized learning disorders may initially excel in school, until they hit a limit where their compensatory skills unravel.
The 2010 American Academy of Pediatrics Task Force on Mental Health reported that nearly 37 percent of children and adolescents either met the DSM criteria for a mental health diagnosis or showed some impairment in functioning. ADHD is seen in nearly 1 in 10 children. Autism spectrum disorders are seen in 1 in 50 children.
This is a global crisis. Pediatric primary care physicians diagnose psychiatric conditions and prescribe psychotropic medicine, but rarely feel adequately prepared by their training to do so.
Highly gifted children are a particular diagnostic challenge. They seem to be wired differently and have developmental trajectories that differ from the norm. Many gifted kids experience the world with heightened and vivid intensities and sensitivities that may be a big plus (allowing them to become creative artists, scientists, inventors, and humanitarians) but also can be a big minus (subjecting them to sometimes overwhelming emotions and worrisome and unacceptable behaviors).
When pediatric diagnoses are carelessly applied, gifted children are frequently mislabeled with ADHD, autistic, depressive, or bipolar disorders.
Dr. Jack Wiggins, former president of the American Psychological Association, stated, "This is a widespread and serious problem -- the wasting of lives from the misdiagnosis of gifted children and adults and the inappropriate treatment that often follows."
Yet sometimes being gifted effectively hides learning and mental health conditions. Giftedness may over-compensate for weaknesses, masking the weakness and sometimes the giftedness. Despite the seriousness of misdiagnosis, physicians are exposed to an alarmingly few articles in the pediatric medical literature about the complexities of giftedness, while many parents also hesitate in discussing giftedness with their doctors, some with the belief that giftedness plays no role in medical health.
Dr. James T. Webb, clinical psychologist, author, and founder of SENG (Supporting the Emotional Needs of the Gifted), stated, "Unfortunately, extremely few psychologists, psychiatrists, pediatricians, or other health care professionals receive any training about characteristics of gifted children and adults, particularly behaviors of bright, creative persons that can sometimes resemble or conceal disorders."
So, while some gifted kids are erroneously labeled and medicated for mental health disorders they do not have, others are unrecognized for learning or mental disorders they do have.
Normal giftedness can be easily confused with a diagnosable mental disorder. Gifted kids may talk a lot, have high levels of energy, and be impulsive or inattentive or distractible in some settings -- similar to symptoms of ADHD. It's not unusual for gifted kids to struggle socially, have meltdowns over minor issues, or have unusual all-consuming interests -- all pointing to an inappropriate diagnosis of autism.
What results is that the gifted frequently feel alone and alien in a world that doesn't fully understand them.
Dr. Daniel B. Peters and Dr. Edward R. Amend, both clinical psychologists, in a chapter of Handbook for Counselors Serving Students with Gifts and Talents (2011), wrote, "Although there is no doubt that medication has its place in the management of behavioral and psychological disorders ... the practice is not appropriate when medication is incorrectly used to suppress the misunderstood behaviors of gifted children."
Giftedness too is not always seen as a socially positive and valued trait. Many gifted kids are bullied, others underachieve to hide their abilities, and some experience anxiety and depression with increased risk for self-harm. As many as 20 percent may drop out of school. The social and emotional needs of many gifted children are ignored. Many seek homeschool and early college as more suitable alternatives, though some bypass higher education altogether, having become disillusioned with their earlier experiences, or unable to cope if untreated for unrecognized learning or mental health issues.
There is an urgent need for physician training in giftedness and dual diagnoses. They see kids for very brief visits and many are too influenced by drug marketing (as are parents and teachers). Over-diagnosis and over-treatment are commonplace.
The typical 15-minute exam is not sufficient to accurately distinguish disorders. A gifted child presenting with distractibility or inattentiveness may or may not have ADHD. A seemingly bright child who just gets by in school may be severely struggling with an unrecognized learning disorder hidden by gifted over-compensation. Gifted children may also hide depression and suicidal thoughts.
It is crucial to properly distinguish pathology while accurately addressing concerns. Sometimes the best remedy is simply proper educational placement. Thus, when medical diagnoses are made too quickly, the required conversation abruptly ceases and opportunities to make a positive difference are lost.
The book Misdiagnosis and Dual Diagnoses of Gifted Children and Adults (2005) offers helpful advice in distinguishing if a gifted child also has other issues needing further evaluation:
• Does the developmental history indicate early milestones or precocious development?
• Are the behavior patterns typical ones for gifted children and adults?
• Are the problem behaviors found only in certain situations or contexts, rather than across most situations?
• Are the problematic behaviors reduced when the person is with other gifted persons or in intellectually supportive settings?
• Can the problematic behaviors be most easily explained as stemming from a gifted/creative person being in an inappropriate situation?
• Are the behaviors ones that really cause an impairment in personal or social functioning, or are they quirks or idiosyncrasies that cause little impairment or discomfort?
Finally, the concept of normal must not be defined by a narrow and arbitrary set of criteria. Not everyone processes information and sensory inputs in the same way, nor does everyone develop along the same expected timeline to the same endpoint. Variability does not automatically indicate a disorder.
Dr. Allen Frances, psychiatrist, author, and chair of the DSM-IV, states: "One of the disasters of the diagnostic inflation is that expectable and desirable individual difference is so often mislabeled as mental disorder. Caution is particularly necessary in diagnosing kids. They are so developmentally labile and have such a short track record that diagnostic mistakes are frequently made and once made are extremely difficult to undo."
Together let's proceed with extreme caution. Our children depend upon it.
Information About Giftedness, Gifted Misdiagnosis, And Dual Diagnoses
Additional Gifted Organizations (With Additional Information, Articles)
 Webb, James T., et. al. Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, Ocd, Asperger's, Depression, and Other Disorders. Scottsdale, Ariz.: Great Potential Press. 2005.
 Grobman, J. "Underachievement in Exceptionally Gifted Adolescents and Young Adults: A Psychiatrist's View." Journal of Secondary Gifted Education. 2006 17(4) 199-210.
 J Renzulli, S. Park. "Gifted Dropouts: The Who and the Why." Gifted Child Quarterly. Fall 2000 44: 261-271.
For more by Marianne Kuzujanakis, click here.
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Director Kim Weild
JODY CHRISTOPHERSON: Tell us about beginning your new collaboration at Arizona State University on Charles Mee's's soot and spit, a play about the outsider artist James Castle who was born profoundly deaf and was possibly autistic too?
KIM WEILD: I first read the play seven years ago and I couldn't stop thinking about it. Over the years I revisited the play intermittently. Chuck and I would talk about various projects and invariably this play would come up again. It's a complex play and I knew in order to do it, I was going to need some major support (not to mention funding). Fortuitously when Jake Pinholster called inviting me to return to ASU Herberger Institute School of Theatre and Film to direct, he asked for three plays on my dream list. I remember saying to him, "there's this play that I love, I can't stop thinking about it, it might be impossible to do but if there is one place that can handle all of its size and complexities, it is ASU." Two weeks later when I heard Jake say, "We want to make soot and spit" I was thrilled, excited and terrified and when I told Chuck, he replied, "Oh Kim, that is FANTASTIC!" Then I dove in and started asking Chuck a ton of questions about the play because frankly, I think it is one of his most difficult and "out there" plays and even though I had had a deep visceral response to it, I was baffled as to how to do it. During the course of one conversation he said that he thinks of this play as a "landscape" and I got it! I understood what he meant and suddenly many things clicked into place for me. I love working on his plays because he throws down the gauntlet. He demands everything of you as a collaborator.
Robert DeMayo as James Castle in soot and spit
JC: You have been a NY based director as well as someone who works nationally and internationally. Can you talk about theater as a storytelling medium in New York vs different regions? Do you hope to bring your current work to NYC?
KW: Good storytelling is good storytelling. You know it when you experience it. I have found some regions outside of NY are more adventurous in their taste and how they think about the development of a piece. It's a little hard to explain but I think some of it has to do with TIME. I also think it is a must for NY based artists to get away from NY. There is such a saturation of work here, which is great, but it can be anxiety producing, understanding that you can leave and come back, is very healthy and helps give you perspective....and pick up new ideas.
Y-E-S! We absolutely hope to bring soot and spit to New York and other places too.
JC: I hear the piece is very visual, also has music. Can you tell us how the music and visual elements relate to Castle's work? Is there dance? I'm really fascinated to discover how you are using music in a piece about a profoundly deaf artist.
KW: The media in this show is ASTONISHING and I am not saying that because it's my show. I am saying it because Boyd Branch is brilliant and what he has managed to do is bring Castle's artwork to life. Over his lifetime, Castle created upwards of 20,000 works of art. In his play Chuck has written in the media. What I mean is, he says, "And now a Castle drawing shows up and then another one and then another one until the sides of the ice house are covered and from here until the end, the media never goes away."
I will be the first to tell you that I am cautious and skeptical of media. I think it can be too seductive and can undermine the integrity of a production, undermine the actors and actually undermine what I value so much about the theatre-the actors' voices and bodies telling stories in Time and Space but this media, this media, I can't imagine this piece without this media.
Yes, there is dance. Because this was built at ASU which has a strong dance department I was asked to work with one of their choreographers, Katie Chilton and I said yes. She's done a lovely job, however there is one dance, the hula, which I put together drawing from an exercise I gave to the cast. It's a gesture dance, each of the gestures comes from their characters in the play and each gesture shows up in the play before we get to the dance-it's about accumulation and repetition. Much of what I have done with this play is through investigating repetition and silence...and yes, there is music. There is a five piece band that plays bluegrass music, shape note music and something I don't know how to define other than to say, every time I hear this particular song which Chuck's stage direction for is "...and sings a lament" I am cracked open with joy and the pain of being human.
Weild rehearse a dance with actress Davina Watson
JC: You are also working with a chorus of performers with Down Syndrome? Can you tell us about this choice?
KW: It's Chuck. He has a stage direction: "and now a chorus of performers with Down Syndrome appear and sing..."
For me, this chorus is about ability, otherness, the outsider, vulnerability, joy and the desire for connection, for communication. I was worried that after being cast, some of the parents would be upset with what we were asking the performers to do even though I gave all of them and the guardians a copy of the play to read so they could decide whether or not they wanted to allow the actors to audition in the first place. None of them turned us down, they all auditioned. I will also say working with Davina, Rick, Jonathan and Taylor has been life changing. Not to sound corny but we are all filled with so much love for them and they have taught everyone about what it means to truly be in the moment on stage -- they have taught us a great deal.
JC: You have worked on Broadway and Internationally can you tell me about the decision to also run WeildWorks, your indie theater company and develop work over time? (Would you call it Indie?)
KW: Yes, I would call it Indie. I'm actively investigating a different model for this company and what it means to be a Creative/Artistic Director who also wants to produce other artists as well as collaborate with scientists and engineers who are designing and developing software/products that can be applied to make the work accessible for/to all but not in the standard ways. I want to push the art form from all aspects. I think a lot about Tennessee Williams essay on plasticity. It's a bit of a tricky balance but I am incredibly excited about it.
JC: I love the appearance of a small chicken in recent photos of you. What is its name and when did you become friends?
KW: Well, that small chicken isn't so small anymore. Her name is Mimi and she is a star! Chuck has a chicken in some of his plays and he's never had a live one...until now. Ron Thacker the TD went out and purchased six hatchlings and we have hand raised them, teaching them to walk with us, sit watching rehearsal, ride shoulders etc. Mimi emerged as the calmest. We did get in to a little bit of a sticky wicket because I imprinted on her so in rehearsals when we were working her scenes I had to stay out of her sight line otherwise she would fly over to me and want to roost on me....everyone should be so lucky.
Mimi at rehearsal for soot and spit
JC: Theater is an opportunity to create worlds. What world do you hope to be creating and offering up to your audience?
KW: An experience of the world of the outsider and certainly the world of James Castle. We have endeavored to make the invisible visible.
The World Premiere of Soot and Spit by Charles Mee plays through Sunday, April 14, with performances at 7:30 p.m. Friday and Saturday, April 5-6, a matinee at 2 p.m. Sundays, April 7 and 14, and 7:30 p.m. Thursday-Saturday, April 11-13. ASL Interpreted performances: Friday April 12 - 7:30pm, Saturday April 13 - 7:30pm
To arrange tickets please call (480) 965-5337. Price $8-$16
KIM WEILD is a Manhattan-based theater director who specializes in new plays, re-imagined classics and devised work. She describes her work as ensemble-based and deeply collaborative. In 2010, Weild founded WeildWorks with the inaugural production of Mee's Fetes de la Nuit, which went on to be nominated for a Drama Desk Award and seven New York Innovative Theatre Awards, including Outstanding Director. Weild is the recipient of a Kennedy Center Directing Fellowship, a Park Avenue Armory Artist residency, a Shubert Fellowship and other noted awards and honors. Her next production will be Harold Pinter's A Kind of Alaska for New York Live Arts/Live Ideas inaugural festival celebrating "The Worlds of Oliver Sacks." opening April 20th and curated by Bill T. Jones and Lawrence Weschler. She is also currently developing a Deaf opera for Senses Askew and collaborating on projects with artists based in Paris, Istanbul and Berlin.
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