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Autistic Self-Advocate Stands Up For His Rights

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Video Of Self-Advocate Silenced By School Board Goes Viral

By  via Disabilityscoop.com

When a 14-year-old went before his local school board to take issue with the implementation of his individualized education program, he was rebuffed and now video of the incident is going viral.

Christian Ranieri, a high school freshman with autism, attempted to voice his concerns to the Northport-East Northport Board of Education in Northport, N.Y. earlier this week.

In a speech that Ranieri told Northpoint Patch he worked on for three hours, the teen spoke to the board about his experience with autism and said that his IEP was not being followed. Ranieri indicated that he was inappropriately disciplined and suspended because of his disability.

But just minutes into Ranieri’s speech, the teen was cut off by board president Stephen Waldenburg who said that disciplinary matters could not be discussed at the public meeting.

“This entire discussion which involves disciplinary action is totally improper for a public session,” Waldenburg said.

Ranieri’s parents objected saying that their son just wanted to be heard, but to no avail. Officials at the meeting told the family that their concerns should be taken up with the district’s superintendent, Marylou McDermott.

Video of the interaction is now going viral, with more than 46,000 views on YouTube since it was posted Tuesday.

Nonetheless, Waldenburg is sticking by his handling of the incident, telling Patch in a statement that “we recognize the sensitivities of this issue, but stand firm in ensuring that we are in full compliance with all state and federal laws, as our oath of office requires.”

 

http://www.disabilityscoop.com/2013/10/11/video-silenced-viral/18798/

A Blind Musical Genius With Autism

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WATCH: A Jaw-dropping Performance From a Blind Musical Genius With Autism.   by Adam Ockelford, via Huffingtonpost.com

‘Why’s he doing that?’ Freddie’s father sounded more than usually puzzled by the antics of his son.

After months of displacement activity, Freddie, 11 years old and on the autism spectrum, was finally sitting next to me at the piano, and looked as though this time he really were about to play. A final fidget and then his right hand moved towards the keys. With infinite care, he placed his thumb on middle C as he had watched me do before — but without pressing it down. Silently, he moved to the next note (D), which he feathered in a similar way, using his index finger, then with the same precision he touched E, F and G, before coming back down the soundless scale to an inaudible C.

I couldn’t help smiling.

‘Fred, we need to hear the notes!’

My comment was rewarded with a deep stare, right into my eyes. Through them almost. It was always hard to know what Freddie was thinking, but on this occasion he did seem to understand and was willing to respond to my request, since his thumb went back to C. Again, it remained unpressed, but this time he sang the note (perfectly in tune), and then the next one, and the next, until the five-finger exercise was complete.

In most children (assuming that they had the necessary musical skills), such behavior would probably be regarded as an idiosyncratic attempt at humor or even mild naughtiness. But Freddie was being absolutely serious and was pleased, I think, to achieve what he’d been asked to do, for he had indeed enabled me to hear the notes!

He stared at me again, evidently expecting something more, and without thinking I leant forward.

‘Now on this one, Fred’, I said, touching C sharp (the black note next to C).

Freddie gave the tiniest blink and a twitch of his head, and I imagined him, in a fraction of a second, making the necessary kinesthetic calculations. Without hesitation or error, he produced the five-finger exercise again, this time using a mixture of black and white notes. Each pressed silently. All sung flawlessly.

And then, spontaneously, he was off up the keyboard, beginning the same pentatonic pattern on each of the twelve available keys. At my prompting, Freddie re-ran the sequence with his left hand — his unbroken voice hoarsely whispering the low notes.

2013-10-17-DerekPavacini_2013X_photo.jpg

So logical. Why bother to play the notes if you know what they sound like already?

So apparently simple a task, and yet … such a difficult feat to accomplish: the whole contradiction of autism crystallized in a few moments of music making.

As I later said to Freddie’s father, if I had to teach a ‘neurotypical’ child to do what his son had so effortlessly achieved, it would take years of effort and hundreds of hours of practice to get to grips with the asymmetries of the Western tonal system and their relationship to the quirky layout of piano keyboard. Yet Freddie had done it unthinkingly, just by observing me play, hearing the streams of notes flowing by, extracting the underlying rules of Western musical syntax, and using these to create patterns of sounds afresh. I had never played the full sequence of scales that Freddie produced. He had worked out the necessary deep structures intuitively, merely through exposure to the language of music. Viva Chomsky!

So how did this child — by all accounts with a severe learning disability — do it?

The phenomenon is explored in the TEDTalk “In the Key of Genius” that I gave with Derek Paravicini, with whom I have been working for the last 30 years. Derek, now 34, like Freddie, has severe autism and has learning difficulties. Unlike Freddie, though, he is also blind — so his perceptual and cognitive capabilities, that permit him to make sense of the world, are even more constrained. In fact, Derek’s capacity to reason and to use language is in the bottom 0.05 percent of the population. Yet his capacity to process musical sound is in the top 99.99 percent: actually, the best I’ve ever encountered, even among advanced performers. He enjoys an international reputation as a pianist — a unique creative talent bolstered by a formidable technique, acquired through many thousands of hours of practice.

How can this be?

In the TEDTalk, I argue that the two things are related. It was Derek’s inability to process language in his early years, coupled with his inability to ascribe functional meaning to everyday sounds, that, I contend, led to his heightened ability to process all sounds in a musical way. One traded off the other. In fact, without the former, it is almost certain that the latter would never have developed. Derek’s disabilities and abilities, like Freddie’s are, I believe, different sides of the same coin.

 

For information on Derek, please see: http://www.sonustech.com/paravicini/index.html and https://www.facebook.com/derekparavicini

To contact Adam: a.ockelford@roehampton.ac.uk

For further reading on autism and music: http://www.amazon.com/Music-Language-Autism-Exceptional-Strategies/dp/1849051976/ref=sr_1_2?ie=UTF8&qid=1379176785&sr=8-2&keywords=ockelford

For further information on special talents in autism: http://rstb.royalsocietypublishing.org/content/364/1522/1345.short

Ideas are not set in stone. When exposed to thoughtful people, they morph and adapt into their most potent form. TEDWeekends will highlight some of today’s most intriguing ideas and allow them to develop in real time through your voice! Tweet #TEDWeekends to share your perspective or email tedweekends@huffingtonpost.com to learn about future weekend’s ideas to contribute as a writer.

http://www.huffingtonpost.com/adam-ockelford/autism-genius_b_4118805.html?utm_hp_ref=autism

A Teen’s Guide To Understanding & Communicating With People With Autism

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WESTFIELD TEEN CREATES VIDEO FOR PEERS TO UNDERSTAND AUTISM

Westfield teenager Alexandra Jackman recently created a video aimed to encourage teens to understand and accept those with Autism Spectrum Disorder.

During Jackman’s time in the Teddy Roosevelt Scholars independent study program at Roosevelt Intermediate School last year (eight grade) she wrote and directed the video as her class project.

“The purpose of my specific project was to help teenagers be more aware and understanding of people with autism spectrum disorder,” Jackman explained. “The video is so important to me because I feel it could help anyone, especially typically-developing teens, to feel that they can interact and get to know people with autism and not be scared of the differences. People tend to be more accepting when they are more knowledgeable.”

In the video, Jackman asks middle school students and teachers “What is Autism?” many of them who are unsure. She also speaks to the founder of Autism Family Times, parents of children with Autism, an Autism educator and a doctor. She also highlights children of all ages with Autism and even adults who have Autism. Take a look at the full video

Her video is geared towards teens, but is relatable to all ages on the basics of how to accept and understand those who have Autism Spectrum Disorder.

Since age 10, Jackman has been working with the organization Autism Family Times as a peer mentor for children with Autism. She says the experience is both rewarding and eye-opening.

During the creation of the video, Jackman told Patch, “Maybe if they (middle schoolers) see someone with special needs, they won’t be so afraid to talk with them. For a lot of people, if they don’t understand something, they can be afraid.”

Jackman is now a freshman at Westfield High School, but has said being a part of Autism Family Times has made her consider working in occupation therapy.

“Because of this (experience) I know that I definitely want to do something with special needs when I get older,” she said.

http://westfield.patch.com/groups/volunteering/p/westfield-teen-creates-video-to-encourage-understanding-of-people-with-autism

MTV To Highlight An Autistic Man’s Transition To Adulthood

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WITH ‘WORLD OF JENKS’,  MTV TACKLES TRANSITION

MTV is putting a spotlight on the ups and downs facing those with disabilities as they transition to adulthood, with a documentary-style series following a 21-year-old with autism.

Chad DenDanto, left, who has autism, is one of three young adults whose lives are documented by filmmaker Andrew Jenks on MTV's

Chad DenDanto, left, who has autism, is one of three young adults whose lives are documented by filmmaker Andrew Jenks on MTV’s “World of Jenks.” (MTV)

Chad DenDanto, now 23, is one of three young adults featured on the network’s “World of Jenks” premiering Monday at 11 p.m. ET. The show, beginning its second season, features host and documentarian Andrew Jenks living with each subject for a year and filming their journeys.

In addition to DenDanto, Jenks also follows Kaylin, a fashion designer who has battled cancer, and D-Real, a street dancer who overcame his gang lifestyle and hopes to inspire others.

DenDanto — who is diagnosed with pervasive developmental disorder, which is on the autism spectrum, and attention deficit hyperactivity disorder — first appeared on the show in 2010 as the subject of a half-hour episode. But now Jenks takes a more in-depth look, moving into DenDanto’s Port Jervis, N.Y. home and tagging along for what’s described as the “biggest year of his life.”

“We realized (at MTV) that we had an opportunity to humanize and destigmatize what it’s like to have autism,” the show’s host, Jenks, 26, of New York, said. “One in 88 American children have autism now. It’s something prevalent that could use more mainstream media attention.”

DenDanto’s television debut nearly three years ago showcased not only the daily issues he faces having autism — including hypersensitivity to smells and noises, such as his classroom bell or cars honking, or severe anxiety over deviation from his schedule — but also his sense of humor and his sensitivity to being treated differently.

This season, viewers get to know DenDanto as he graduates from high school, tries to find a job and begins dating.

“During the first episode you’re thinking, ‘OK, one of the guys on the show has autism. That’s what his story is about.’ After the last episode you realize Chad is really funny, he has a great relationship with his girlfriend, he loves food and Italian culture and fart jokes, and you just know him as Chad. Autism no longer defines him,” Jenks said.

http://www.disabilityscoop.com/2013/03/01/with-mtv-transition/17404/

 

Here’s a clip from Season 1 featuring Chad and Andrew Jenks at the beach: 

Canary Kids: Putting A Stop To The Autism Epidemic (Video)

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Canary Kids: Putting a Stop to the Autism Epidemic from 50EGGS on Vimeo.

Canary Kids, a new film project directed by award-winning film marker Mary Mazzio of 50 Eggs Films and sponsored by the nonprofit organization Epidemic Answers, takes a closer look at the causes and cures of the modern autism epidemic.
Canary Kids follows 7 children on their road to recovery from diagnoses of autism, ADHD, asthma, chronic Lyme or other amalgamation of chronic (environmentally-derived) symptoms, through 18 months of unique treatment.
The film documents the devastating health trend among children in the US, outlining the key factors that have contributed to the epidemic of chronic illness, and demonstrating how children can recover from conditions as varied as asthma and autism by stepping outside the conventional Western medical paradigm.
This film seeks to educate viewers and show that we are all a part of the autism epidemic: Asthma, ADHD, allergies, Lyme, OCD, SPD, LDs, diabetes, obesity, Crohn’s, colitis, rare autoimmune conditions . . . we are all affected.
THIS FILM STILL NEEDS FUNDING!
If you’d like to make this important film a reality, consider donating at:
epidemicanswers.org/donate/
More information about the film can be found at:
epidemicanswers.org/canary-kids/

http://vimeo.com/60780290

Jubilee Project, Fireflies

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AllThingsBoys Blog

According the the CDC:

“March 29, 2012 — One in every 88 U.S. children — and one in 54 boys — has autism, the CDC now estimates.”

Recognizing and diagnosing Autism spectrum disorders has come so far in the last twenty years, as well as treatment.  Treatment is costly and labor intensive, and many families struggle to find a way to pay for it, or to manage it themselves.  It is a complex situation fraught with difficulties, strong emotions and a component of fear.

Dr. Lovaas, who pioneered ABA Therapy for autistic children once said that there was no way to predict outcomes for children with Spectrum disorders.  A mildly affected individual might have years of therapy to no effect, while someone severely affected could go on to be indistinguishable from his normally developing peers.  For me this added an element of anxiety, because I saw it as a crapshoot…

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The Script – Hall Of Fame, featuring will.i.am

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As hard as each day gets, there is no better feeling than accomplishing something great!  Be the best you can be to let your children reach their full potential! -Ed

Music video by The Script feat. will.i.am performing Hall of Fame. (C) 2012 Sony Music Entertainment UK Limited