Making Sense Of Sensory; Part 1

Logically, if light and sound have the power to stimulate, calm or regularize us, we should be able to tap into this same energy for therapeutic purposes. But, what is this “normal” state we are attempting to “return to”?  

Consciousness .. that continuous, internal dialogue combining “prize-fight announcer” reporting on the body and its’ physical  surroundings with and self-talk as the mind contemplates what to focus upon.  Are my senses confirming:

• danger?   If so,fight or flee.
• continuity of perceived context?  Am I still the same person I was a micro-second ago? Is the world different than I believe it should be at this moment?
• it is a safe time to reflect.  If so, I will think about my thinking.

What happens to our Consciousness when our senses are no longer or reliable?  We understand that certain chemicals, or their absence can alter our state of consciousness.  Can we draw analogies to the sensory system?  What are the effects of exposure to aggravating stimulation or an inability to process sensory signals properly?

Here’s some food-for-thought before passing judgment on new therapeutic approachs to Sensory Integration.

Sacks’ investigation into unusual sensory cases, which fills eleven volumes, are summarized here along with quotes lifted directly from the Wikipedia:

 Dr. Sacks interview  at the Harvard Book Store  from NPR Radio

Migraine (1970)  Sacks describes the nature of and treatments for migraine particularly examining the visual aura feature that is common to many sufferers, along with the premonitorys, a type of extrasensory perception that would involve the acquisition or effect of future information that cannot be deduced from presently available and normally acquired sense-based information or laws of physics and/or nature.^[5

Awakenings (1973)   Recounts the life histories of victims of the 1920s encephalitis lethargica epidemic and Sacks’ the amazing events that followed 40 years later when he administered L-DOPA, a new drug, to help these patients.

A Leg to Stand On (1984)   Sacks's own experience, after an accident, of losing the awareness of one of his legs

The Man Who Mistook His Wife for a Hat (1985)   The title of the book comes from the case study of a man with visual agnosia.^[1] , the inability to recognize familiar objects or faces. Twenty-four essays dealing with brain deficits and excesses as well as to spontaneous reminiscences, altered perceptions, and extraordinary qualities of mind

 Seeing Voices: A Journey Into the World of the Deaf (1989)  Explores the past and present events that shape the world of deaf people in the United States and contemplates a Sign language and it’s striking concomitant enhancements of perception implying the resourcefulness of the human species.  Sign is not only a language but the very medium of deaf culture.

An Anthropologist on Mars (1995)  Case histories of autism and Tourette’s Syndrome.  Essays explore historical case studies of patients both in and oput  outside the hospital, often traveling considerable distances to interact with his subjects in their own environments. Sacks concludes that “defects, disorders, [and] diseases… can play a paradoxical role, by bringing out latent powers, developments, evolutions, forms of life that might never be seen, or even be imaginable, in their absence.

The Island of the Colorblind (1997)   Exploration of a society where congenital colorblindness is the norm and home to a strange neurologic malady resembling Parkinsonism and Alzheimer’s

Uncle Tungsten: Memories of a Chemical Boyhood (2001)

A memoir

Oaxaca Journal (2002)  A trip to see ferns in Mexico turns into a meditation on Mesoamerican civilization, chocolate, agriculture, mescal, amateur naturalists and more.

Musicophilia: Tales of Music and the Brain (2007)

“… Sacks turns to the intersection of music and neurology — music as affliction and music as treatment… Sacks, in short, is the ideal exponent of the view that responsiveness to music is intrinsic to our makeup. He is also the ideal guide to the territory he covers”  Peter KramerThe Washington Post

The Mind’s Eye (2010)

The complex workings of the brain and its astounding ability to adapt and overcome disability”.

”…my ‘shyness’, my ‘reclusiveness’, my ‘social ineptitude’, my ‘eccentricity’, even my ‘Asperger’s syndrome’”, can, he thinks, be put down to lifelong face blindness. A rare consequence of brain injury, it is now understood to be quite common in the general population.” The Mind’s Eye by Oliver Sacks – A Review, Nov 6, 2010

Next, we examine activities designed help balance/retune the sensory system:

Dr. Nelsen Mane, a strong proponent of hemispheric integration training  And here, boiling 60 minutes down into 151 seconds.

 Alex Doman works  with sound.  I know him through our work together  as advisors to in development of sensory-friendly criteria for Sensory Star Hotels and Resorts.

The National Light & Sound Therapy Centre offers desensitization exercises

The power of music a seen in 2 brief videos

Dr. Laz, “Touching Lives Through Music & Education”   music therapy program for students with profound special needs

Adam Goldberg, “Hands On Music: An iPad Band for Students with Disabilities”.  Using touch technology to help students use their musical gifts rather than battle the barriers thrown up by their constraints. 

WHAT TO UNDERSTAND BEFORE JUDGING A SENSORY-BASED THERAPY:

• The underlying science and documentation
• For whom this treatment is recommended; what is it’s relevance to your need
• What are its’ strengths and weaknesses
• What are realistic timetables for achievable goals.
• The professional standing of the therapist

WHAT TO REMEMBER BEFORE CONSIDERING A SENSORY-BASED THERAPY:

• Be informed.  That means do your homework
• Be objective.  You may not like it but, if the shows merit, it is worthy of exploration
• Be flexible.  There is no silver bullet. Let’s face it; we don’t have a very big arsenal.  The more tools we discover,  the better able we will be to help.

Does anyone have their own good story about how music/light may have played an important role in some school activity?

Perhaps you would like to suggest one.  

Sharing hope with HOPE

The Hope Center For Exceptional Needs, Riyadh

I recently joined  HOPE For Exceptional Needs,  the Facebook page for parents and staff of  The Hope Center  special needs facility in Saudi Arabia that is unique in that it accepts students regardless of race, religion, gender, national origin, or type of disability.   

In 2003, after only four years of operation,  the Ministry of Social Affairs  identified HOPE as one of the top fourteen “standardized” schools for the disabled in the Kingdom.

I posted links to helpful information on their FB page.  In return, I received effusive thanks and requests from several parents and teachers for basic advice about autism and other handicapping conditions.  I was able to answer some of their questions.  But then I was asked for information on how to handle learning and writing problems related to Cerebellar Ataxia.  I was not familiar with this condition so I did some homework   (See my post on Cerebellar ataxia) and arrived at the following conclusions:

1. Cerebellar Ataxia is too large and complicated a topic to be addressed on a FB page
2. There are lots more topics like this that educators must deal with
3. Is I wanted to help people at the Hope Center, I was going to need help… lots of it!

I had already met with Kathleen Posa, principal of  PS177Q in NYC to discuss a “sister” school arrangement with The Hope Center through which teachers and related service providers would voluntarily answer questions of a practical nature posed.   I am grateful to Principal Posa for supporting the idea.  But, after I was hit with the Cerebellar Ataxia question, I realized the problem was larger than I first thought.  PS177 is a premier, public special education school in NYC.  Fully half of our 550 students are on the Spectrum.  But, while my school could address issues related to autism, there would be many questions on other handicapping conditions.  Obviously, sister schooling would not be entirely satisfactory.

I turned to Kathleen Tehrani and Stephen Shore for advice.   Coincidently, they were discussing the same issue with advocates Fazli Azeem and Lars Perner but within the larger context of a peer-sharing platform for all Southeast Asia.  While everyone agrees there exists an important and largely unfulfilled need for practical advice throughout the world, the question remains as to how best to serve this need.

I am giving it a shot.  I have set up “Sharing with Hope”, a  sub-group of  my LinkedIn group  as a platform for members to share their knowledge and experience with the folks at the Hope Center.  The mechanism for peer-sharing  remains to be worked out.  What we learn from this effort will help in development of a larger platform supporting multiple schools in the Middle East and South East Asia.

Those who would like to participate in our little mentoring experiment are invited to request membership in this new subgroup where you can share your knowledge and experience.

Read the round table discussion

A deep pain that can lead to isolation; fathers of Spectrum children

Autism is more than a cruel disappointment for men. It is a deep pain that can lead to isolation, self-hate and even cruelty to those closest to us.

Cinematographer Charles “CJ” Jones has walked the walk and now he’s talking the talk. His film Autistic Like Me; A Father’s Perspective tackles men’s issues head-on in a cinéma-vérité style that is poignant, powerful and punchy.

I met “CJ” when he appeared, camera in hand, in response to my request of WNYC Media  for a good videographer to document Dr. Stephen Shore’s presentation at a Mt. Sinai Medical Center autism conference in April. We discussed his vision for the film and the need for an associated community outreach program capable of helping men cope with their unique concerns and fears. Since then, “CJ” has teamed up with Robert Naseef and crack film production pros.  I am pleased that the project has progressed so rapidly.

Superficial men’s issues appear unique while, in fact, they are inexhorably tied to the larger public discussion of family issues. I will be calling upon “CJ” for his assistance with the public outreach services I am planning for use in Saudi Arabia and Southeast Asia.

For now, I’ll let the film speak for itself.

Autistic Like Me: A Father's Perspective

http://www.autisticlikeme.net

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The true measure of a man; Steve Job’s legacy

Media video:  Combining autism therapy and technology – KWWL.com – Iowa |.

Only a few weeks ago, it was ”business as usual” in the world of international business, politics, mass media, philanthropy, communications, IT…..   what’s Apple up to?  What’s Jobs’ next surprise?  When will the new iPhone be released? Did you see the iPhone feed from the latest demonstrations?

Now, we are engaged in an international eulogy…  20/20 hindsight enabling us to reflect on the man and the true measure of his impact on the world.  This is as it should be for it is only by understanding our past can we hope to fashion our future…  a future greatly influenced by Steve’s accomplishments and the personal example he set for the rest of us follow.  

This fleeting moment of reflection … at the cusp before Steve transitions from a omnipresent, fact-of-life dynamo into another revered icon in the Pantheon of our group consciousness, is the greatest testament to his contributions and all that made him unique.  Ultimate however, we will remember him more for the course he charted to future events.  The ultimate showman, his passing serves to bring public attention his most recent innovations, the “i-Products” that are the most significant contributions yet made to helping our Special Needs children, siblings, coworkers and friends.   

Thanks for what you have done.  Thanks for what will be done by others.  The Past AND the Future.   The true measure of this man.  Steve Job’s legacy.

Comix? Who cares!

I came across Byron Preiss in an old newspaper article.   He wanted to use comic books to teach kids how to read.  I wanted to learn more about him. so I started an Internet search for a man who built a publishing empire from a comic book and a dream 

“In 1971, while Preiss was teaching at a Philadelphia elementary school, he conceived and with Jim Steranko produced an anti-drug comic book, The Block, designed for low-level reading skills. Published by Steranko’s company, Supergraphics, it was distributed to schools nationwide.”

Jim Steranko, Preiss’ life-long friend and collaborator said:

 ”For more than three decades, he (Byron) spearheaded a multiplicity of mediaforms, from comics and ebooks to electronic games and CD-ROMs, that fused words and images like few other individuals would achieve in the entertainment arts. As an author, he generated dozens of books, from hard science and history volumes to profusely illustrated children’s literature. As a packager, he produced a stream of quality fiction and nonfiction titles for almost every primary publishing house… Preiss was a subtle, yet seminal force in contemporary popular culture and specifically in the evolution of narrative illustration”  

~  CLICK HERE TO WATCH THE VIDEO   ~

How To Save The World

Cerebellar Ataxia

I have recently joined HOPE For Exceptional Needs, a Facebook page for parents and staff of The Hope Center, a model special needs facility in Saudi Arabia.   The Hope Center is unique in that it accepts students regardless of race, religion, gender, national origin, or the number of disabilities a student has.   In 2003, only four years after start of operation,  the Ministry of Social Affairs named HOPE as one of the top 14 “standardized” schools for the disabled in the Kingdom.

HOPE serves children with many different special needs.  Recently I was asked by teachers for information on how to handle learning & writing problems related to Cerebellar Ataxia.  I am not familiar with this condition.  So I did some homework.

• Young children are most commonly diagnosed with acute cerebellar ataxia following a viral infection while current and chronic cerebellar ataxia may occur from stroke, migraines, multiple sclerosis, brain tumors, seizures and other genetic, acute or autoimmune diseases.

• Symptoms of cerebellar ataxia may include uncoordinated movements in the limbs, clumsiness, unsteadiness, abnormal eye movements and visual complaints.

Obviously, this is a debilitating condition for young learners.  The good news is that it is treatable and correctable.  But teachers and therapists will need guidance in how to apply our knowledge therapeutically.  Therefore, I am contemplating the creating a HELP BLOG specifically to address such questions.   While I wish the blog could be a source for definitive resources, it will more likely be a simple, starting point for serious research, serving to point readers in the right direction.

This blog post will be a test of this idea.  I hope you find this information to be helpful.

Michael

 

LINK:       Cerebellar Signs; a Patient Plus article.

PatientPlus articles are written for doctors and so the language can be technical, however some people find that they add depth to the patient information leaflets. You may find the abbreviations record helpful.

 

LINK:       Treating ataxia

Ataxia UK is the UK’s leading charity for people living with ataxia and provides information about specific ataxia services. It is also a useful resource for people who have just received a diagnosis of ataxia.

LINK:     Physiotherapeutic Exercises For Cerebellar Ataxia 

The cerebellum controls balance and coordination. It does not function properly during cerebellar ataxia. Young children are most commonly diagnosed with acute cerebellar ataxia following a viral infection. Current and chronic cerebellar ataxia may occur from stroke, migraines, multiple sclerosis, brain tumors, seizures and other genetic, acute or autoimmune diseases.

Courtesy | LiveStrong.com

 

    

LINK:         A Case-Study In Re-Teaching A Traumatically Brain Injured Child Handwriting Skills

Richard M. Kubina Jr., Diane Aho, Michael P. Mozzoni, and Paul Malanga

Abstract: The case study details the efforts to re-teach handwriting skills to a child with traumatic brain injury. The intervention focused on practicing handwriting tool, or foundational, skills. The case study took place during occupational therapy while the child attended out-patient sessions at a post acute rehabilitation center.  Positive results accompanied the intervention and are discussed. After the intervention, it was clear that the form of Byron’s writing vastly improved. In effect, the practice of tools skills of handwriting was accompanied by a doubling in the total amount of words in the see/copy channel, as well as improved legibility in everyday handwriting, a skill not directly addressed. Another positive effect occurred with Byron’s pencil grasp…… After the study, Byron had normal grasp prehension, thumb opposing two remaining digits.

Journal Of Precisions Teaching and Celeration 1998.XV. 32-40 NUMBER 2

 

LINK:     Vestibuar Rehabilitation Therapy (VRT)

“VRT can also improve impairments in executive, visual-spatial, and linguistic abilities, as well as spatial cognition, language and emotional regulation of behaviour, emotional control, as well as reading and writing skills.

….. and are based on Cawthorne-Cooksey Exercises and a combination of adaptation, substitution, and habituation exercises.

(VRT) has been shown to be effective for both adults and children, with vestibular disorders, both peripheral  and central.”

 

LINK:      Watch Holly’s Story 

Technology; Good for autism. Good for teachers!

With all the hoopla lately about how the iPad and iPhone are helping autistic students, we’ve neglected to appreciate how technology benefits teachers.   

As tech coordinator for PS177 in NYC, I had difficulty convincing staff to incorporate computers with their daily lessons.   Six years ago, there weren’t many apps available for working with autism.  There were some primitive educational “games” and a handful of websites.   And we had Where In The World Is Carmine Sandiego.   But none of this stuff provided the appropriate content and delivery options we take for granted today.  Besides, applying this stuff to lessons required new learning curves, something harried special education teachers have little time for.   I was fighting an uphill battle.

I concluded it would be easier to gain IT converts if I focused on how technology could address the teacher’s needs.  Focusing its application in class projects instead of individual lessons would make it easier for teachers to understand the “why” and “how” and  make them more receptive to expending the effort required to learn its’ use.   I needed to promote pet projects.

Adam Goldberg, a music teacher, was one of the first staff members to give it a shot.  We had discussed how Apple’s GarageBand might be used in his music classes.  The app proved a bit clumsy for his purposes.  But, as Adam applied himself to understanding how tech might be applied to his music program, he discovered a renewed sense of optimism and enthusiasm that something pretty amazing might be around the corner.   

 

We understand that Technology is helping students.  

But,  IN THIS VIDEO  shot by Susan Abdulezer of the NYC       Department of Education, we get a picture of how technology  is helping teachers experience renewed enthusiasm in their           role as educators.

Technology: Good for kids. Good for teachers. 

It’s a win-win situation.

“Same-abled” is not a term we often use

Reprinted  from  The Omni Intelligencer

  Recently, I tweeted about an eSchool News article  explaining how technology is redefining disability.  The title of my post,  “Same-abled” is not a term we use often; Get used to it! “ didn’t sit quite right with one reader. . . .

• On 11/17/10  P.R. wrote:
  Michael, “The article is interesting, and I like the concept but I’m not crazy about the term “Same-abled”, it seems redundant (?).  If we are all equally able, then aren’t we all just “able”? I do feel that “dis”abled is too harsh and condemning, but differently-abled, or any of those other terms seems to fit the bill. Obviously, my comment is of no great importance, I just wondered what the thought is behind same-abled, maybe I’m missing something…. “

My reply:
Not sure if I heard the term from someone else, but “same-abled” popped into mind as I reflected on the article. I regard ability as a spectrum of human potential, possessing with both breadth and depth. Many are defined contextually. For example, being paraplegic might not a disadvantage for someone with a desk job whereas being an air breather, stuck in a sinking automobile, certainly would.

Terms like blind, deaf, paraplegic, autistic are not as useful as they once were in simpler times. Historically, these terms were both a diagnosis and a conclusion (“Oh, he can’t read; he’s blind”). Today, many handicaps no longer prevent people from participating in mainstream life (talking books for the blind, wheelchairs that climb stairs, et. al.).  Technology enables ordinary folks to carry out the miraculous (“If God wanted us to fly, he would have given us wings”).  But, it also serves to solve a variety of contextual problems for those of us who are not ordinary in all ways.

I hate the term “autistics”.   I call my students Spectrum Kids.  I rarely say “autism spectrum”; instead, I say communication spectrum.  Naming disabilities is convenient for conversation.  But describing what a person needs to carry out a specific task  is infinitely more productive and encourages egalitarian thinking.  Changing the language forces me to refocus on context.  It also succeeded in getting you to think about it too.

“Same-abled” implies a more level playing field.  Not that we all bring equal talent to the game.  Some players may out-run or our-score, but nobody wins without teamwork.   Given time, technology enables  participation.

In my upcoming Internet series, “The Wonderful World Of Pinky And The Professor” I explore how specific technology is helping to “enable” autistics… I mean au-tutes… ur, Spectrum-ites…. childhood schizophrenic … disordersed… pervasive developmental disordered… you know… those other kids.

11/18/11 P.R. replied

Thanks for the explanation. I like it!
So, you are not necessarily saying that we are all inherently “same-abled”, but more that “with proper accommodations, we can all be same-abled”. Obviously some are gifted with very few struggles, but thanks to technology it is possible for each of us to have success, and each of us are an integral part of our team.

Thank you again for the response. You are correct; the story did make me stop and think!

(Deleted paragraph describing what a great teacher she thought I was. Et cetera, et cetera, et cetera, thank you, Yul Brenner!)

Public attitudes about Special Needs mature as technology helps to “re-humanize” those with special needs. Societal attitudes lag behind new trends.  Thaks to P.R. for giving me a public opportunity to weigh-in on the topic.  Hopefully discussions like this will help accelerate our climb to enlightenment.

Future autism education relies on humans relying on computers

Future autism education relies on humans relying on computers

Oct 16, 2010  

Rather than replacing teachers, computers and modern communication will offer educators insight, hep and support on a scale never before possible.

Listen as Baroness Greenfield explains why computers can not replace the human element in education 

 (click here to see more of the Baroness’s You  Tube videos) 

Now follow Warren Jones as he explains how future computers will be capable of assuming multiple service roles. I

Intelligent Computing in education

(click here for more W. Jones’ videos)

 

Read the original Amp blog at http://amplify.com/u/cw8y

Video Technology In Special Education

I have been a proponent for the use of video with Special Education since 1992 and the first teacher to submit video as evidence of student achievement for the New York State Alternate Assessment Program. I also proposed a program training staff to create and maintain video portfolios that would follow untestable students throughout their school career.

The portfolio, consisting of 90 second vignettes, would serve as evidence of achievement as well as a time line of student progress.

My Video Portfolios presentation to the NYC department of education

Since 2007,I have engaged nearly 200 children on the Spectrum in computer-assisted activities promoting metacognition and language development.

These videos are evidence of how students can be engaged productively by a technology that:

• offers the security of a non-threatening, self-paced  learning experience
• promotes 2-way communication
• empowers them to make personal choices
• provides a fun experience that is easy for them to comprehend
• motivates them to interact with the outside world

Video helped many of my students to interact more appropriately with me and to master an important technology.

I have seen improvements in communication and behavior,  especially by my “lower”  functioning and pre-verbal students.

Recently, I presented on my personal experiences with video at  “Celebrating the Strengths of Autism” in Orlando June 2011.  A video of  this full day event will be published in the near future.