AutismBrainstorm; a new online community

The March edition of HUMAN SPECTRUM MAGAZINE is now online.

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Autism Brainstorm.org is an interactive online community celebrating the abilities of everyone on and around the autism spectrum. It is an inclusive environment for persons on the autism spectrum, their family and caregivers disseminating information,  fostering social interaction and philanthropic opportunity.

Autism Brainstorm intends to provide opportunity for healing, enlightening and entertaining social interaction within a virtual environment. From the comfort of one’s own home, individuals will be able to reach across the state, the country and the world….to positively impact the lives of others.

Making Sense Of Sensory; Part 1

October 25, 2011 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

PEOPLE DEVELOPING METHODS TO HELP BALANCE/ RE-TUNE 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.  Watch his recent presentation in the World Cafe` here onautismBrainstorm.   Alex helped develop the sensory-friendly criteria for Sensory Star Hotels and Resorts .

The National Light & Sound Therapy Centre offers desensitization exercises

THE POWER OF MUSIC IS 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. 

WHEN 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.

WHAT TO CONSIDER:

• What is 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

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

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