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Special Needs


Cloud-burst.tv is a new website dedicated to promoting tolerance, acceptance and inclusion of people with autism through the inspiration of Literature, The Arts, Music and Media. CBTV supports The Art Of Inclusion, a novel project challenging the public to contemplate autism by completing an unfinished work of art appropriately entitled BareFace. Over the past four years more than 100 celebrities and public figures have met the challenge  adding their own creativity to produce co-artist work that has drawn crowds to dozens of museum and galleries in Germany and Australia.  Recently BareFace was used by The Madison House Foundation – an influential organization providing support for young autistic adults – to promote a fundraising event and a month-long exhibition of 200 works by 40 spectrum artists. For information about how this project can help attract attention to your organization’s outreach events by contacting Michael Leventhal at InfoCloudBursttv@gmail.com or use the form below

Links:
Fox New coverage of the Madison House exhibit
Cloud-Burst.tv
Madison House
Artist Gee Vero

contemplating autism

contemplating autism


There is a glaring disconnect between what we understand about Autism and how we as a society apply this information to improve life.  So, how do we change the world? By sharing information… one project at a time.

Just as autism can be described by a spectrum of behaviors, so too can the autism community be described by the various agendas of many special interest groups. In this era of instant communication, their combined activity has increased our base of shared knowledge.

Knowledge alone is not enough to bring about significant change. Action is still required. In the United States and other countries possessing a sophisticated infrastructure, change is largely a matter of juggling financial and procedural hurdles.  Our growing understanding will continue to correct misconceptions, attitudes and ultimately our social systems.

However, elsewhere people are not sharing in this renaissance.  In fact, most people on the spectrum live in countries that do not recognize the humanity of autism.   Most do not provide education or support services for families.  Outcasts in their own countries, unable to obtain public services or afford private attention, families and advocates are desperate for even the most basic information.

Where there is a will….…  As a former teacher turned Internet reporter and editor of the online magazine The Omni Intelligencer , Kathleen Tehrani was acutely aware of the gravity of this problem.  She recognized that in these places even simple, practical information was almost impossible to get.  She envisioned a website that would connect people with knowledge and experience to connect directly with others who really needed it.

With crucial support from mutual friend Tom Schiff, Kathleen,Marc Brenner and I created AutismBrainstorm.org, a free online community designed to accomplish her dream. This website provides three key functions that enable people with questions to connect directly with people who have answers.

1 – ACCESS TO INFORMATION
The Human Spectrum Magazine – Monthly, multiple experts weigh-in on a common theme

2 – SHARING AND DISCUSSION
The World Cafe – An informal meeting place hosting chat and formal webinar rooms for special interest groups

Some of the voices heard on the aB site:  Dr. Stephen Shore, Craig Evans, John Elder Robison, Dr. Robert Naseef, Brian King, Ann Millan, Lars Perner, Keri Bowers, Dr. Stacy Goresko, Anita Lesko, Jane Ferris Richardson, Joanne Lara, Shelly Tzforfas, David Geslak, Michael Woods, Ann Roberts, Susan Diamond, Erik Estebrook, Donna Williams, Frank Louis Allen, Paul Issacs.

3 – IDENTIFYING VALUED PROJECTS
The Kindness Zone –  Identifying projects with immediate and long-term benefits that have a high probability for success.

… there is a way.   Eighteen months after launch and due entirely to Kathleen’s vision and determination, we can announce a milestone.  The Kindness Zone is now featuring two worthy projects for education.

The Ashish Foundation
In a culture that stigmatizes those with intellectual challenges, The Ashish Foundation (501-c) stands out as a voice of reason and compassion.  Since it’s 2007 opening with 7 children, it has grown to include critical training and therapies for 40 children with autism in the New Delhi area who would not otherwise attend school. Assuming the 2001 Indian Census estimate of autism incidence to be correct,  1 out of every 500 people calling New Delhi home is an autistic citizen… altogether more than 20,000 strong.

Their problem. In India, misinformation about mental disability, mental illness and physical impairment is rampant. Mental impaired is associated with diminished intellectual capacity, illiteracy, the inability to  satisfactorily performing valuable  work.. 71% of ‘mentally impaired’ females are illiterate.  And, because autism is NOT covered by the Disability Act of India, millions of people lack of support, diagnosis, and intervention services. Professional services are prohibitively expensive.

Their role.  Ashish fills an important need for affordable, qualified autism services to children as well as working with the community to help change hearts and minds.

Their goal.  $5000 to hire and train additional staff as well continuing their community outreach workers to work with families.

Learn more about the ASHISH FOUNDATION
View their fundraiser

The Caroline Wambui Mungai Foundation
Caroline Wambui Mungai born, Kenya attended Adelphi University in New York pursuing her Master’s degree in Early Childhood Education. Her dream was to become a teacher and eventually desired to start a school to help children from disadvantaged backgrounds. What began in 2005 as an orphanage occupying a four bedroom house donated by the Mungai family has blossomed into a model K-12 school with residential facilities serving 40 children from five Kenyan provinces of Kenya and Tanzania.

Their problem. The Foundation, a 501(C)3  not-for-profit tax-exempt organization registered in New York and in Kenya, need funds to maintain a residence and school for 40 orphans and vulnerable children in Wangige, Kenya.

Their role.  Providing destitute, orphaned children with the help they need to become productive and responsible citizens.

Their goal.   $5000 to help subsidize academic grants for qualified and needy students  

Learn more about The Caroline Wambui Mungai Foundation
View their fundraiser 

Please support these worthy causes. By helping these foundations to achieve very modest goals, you will be insuring that invaluable services will continue to be received by those who need it most.

Please visit AutismBrainstorm to find other projects.  Meet people worldwide. Advise a family. Volunteer your time.   …….and don’t forget to pass this information along to others.


http://www.eyejot.com/flash/eyejot.swf

Andrew Benson Greene, is a long-time advocate for the more than 20,000 victims of the diamond wars.

His vision has been to enable those marginalized by amputation with IT skills that would enable them to participate productively in society.   Andrew’s project was awarded first prize in the recent International ITU (United Nations) Challenge in Geneva.   This project is replicable, scalable and could serve as a social and economic rolel model for other developing nations.

Andrew and I have discussed measures to create a self-funding, vocational/educational model that will not only teach students the essential technical and business skills that will make them competitive in the marketplace but will also benefit local community economies.

Individuals and companies interested in discussing this educational mode or in helping in the development of interactive training materials should contact me quickly at this address:  Leventhal.michael@gmail.com


The choice to substitute formulations has much to do with its intended purpose, severity and economic factors.  However, when it comes to autism, substitution must also consider individual biology.  
Here is what Wiki Answers has to say:
“It is also important to note that the amount of drug which makes it into the bloodstream (bioavailability) can vary significantly for generic drugs; the bioavailability of generics is required to be within 20% of the branded drug, meaning it can be 20% lower to 20% higher. This can make a significant difference for drugs which are very dose-dependent. Also the amount of active ingredient in the generic only needs to be within 7% of the branded drug. All in all the generic might end up quite a bit less or more potent than the branded drug.”
“Two drugs are considered pharmaceutical equivalents when they contain the same chemically active ingredient(s) and are identical in dosage form and strength. Tetracyclines such as minocycline are complex with many properties that may play an important part in treatment response in the arthritic patient. The fact that patients in remission (sometimes for years) while on antibiotic therapy saw a gradual return of symptoms when switched to a generic alerted us to a potential problem with some generics. In three test patients, these symptoms began to reverse immediately upon a return to the brand name version of the drug.

Pharmaceutical equivalence may be affected by many things.

  1. variations in inert ingredients
  2. plants in different parts of the world may produce ingredients that vary in quality, by batch and manufacturing methods. Until recently (this article was published in September 18, 2008), 80% of drug ingredients came from plants in Western Europe. According to a NY Times article April 11, 1996, that is changing. Many ingredients are now being used from plants in China, Japan, South Korea, India and Eastern Europe where they are produced more cheaply. Bob Milanese, president of the National Association of Pharmaceutical Manufacturers, indicates that only a handful of these plants meet FDA standards. “Some others are questionable” due to the difficulty in finding people and budget to “get over and inspect these plants.” Another factor which affects generic quality cited by the same article is the international buy outs and diversification allowing the combination of questionable ingredients into generic production.
  3. In oral drugs, capsule content may be 7% over or 7% under the stated content, e.g. a 100 mg. capsule may be as low as 93 mg. or as high as 107 mg.

Given all this, the difficult task of determining the appropriate dosage of a specific drug for a specific patient seems to an impossible task, destined to fail.  This does not make sense for anyone involved… including the insurance companies who will have to foot the bill for emergency services and therapy that might have been avoided had the proper meds been used.  I acknowledge the need to contain medical costs.  But the savings achieved by substituting generics, frequently can not justify the increase in unnecessary human suffering.

There is a great deal of information (both good and bad) on the Internet.  My recommendation is to have an open discussion with your doctor about your options.

The March edition of HUMAN SPECTRUM MAGAZINE is now online.

Please join our mailing list to be notified when the April edition is made available and to access all the other activities the Autism Brainstorm community site offers

Go here if you wish to join us right now<a

Visit our Facebook page to meet some of our amazing friends

(please “Like” our FB page)

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.

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


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