VOL I  ISSUE XI  JULY 15, 2000

AN ONLINE NEWSLETTER
FOR AND ABOUT ADULT & TEEN ISSUES RELATED TO MOEBIUS SYNDROME

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New book - 'Childhood Revealed: Art Expressing Pain, Discovery and Hope'

New book - 'Happy Ever Afters - a storybook guide to teaching children about disability'

New Book - 'The New Disability History: American Perspectives'

Museum Caters To Handicapped

A BRAVE FACE ... WHEN YOU LOOK DIFFERENT, LIFE DEMANDS A UNIQUE KIND OF COURAGE

Moebius Syndrome Conference

MARCH FOR JUSTICE - We're Voting for Our Lives!

New Biological Directions in Autism

Families of Adults Afflicted with Asperger's Syndrome

(editor's note: There has been a great deal of interest about a new therapy called "body brushing', developed by Steve Clarke, from the UK. 'Body brushing' has been successful, according to parents using the technique, in developing the ability to smile in children born with Moebius syndrome. Since the only other treatment for facial paralysis appears to be "smile surgery", this new therapy has created a great deal of interest. I wrote Steve Clarke, and asked him to share his thoughts on the success of this therapy in teens and adults. The following article is from Mr. Clarke, who will also be presenting a workshop at the Moebius conference next weekend.)

Hi Sandy,

You asked for my thoughts on treating teenage and adult sufferers of Moebius Syndrome with the Bodybrushing Treatment. I have treated several adults, the oldest being 28yrs, and many (13-14) teenagers. There really does not seem to be any treatment difficulties with regards to age, except in the frequency of visits.

A child, between 1 and 7-8 years old, will need their treatment programme reviewed every 4 weeks. An adolescent (9-20 years old) will need reviews every 6-8 weeks and if older then 8-12 weeks would be the norm. This seems to be the only difference from a treatment perspective.

I would refer your readers to my Website, in particular the Overview of the Boston presentation, and suggest that they look at the section containing the different types of Moebius Syndrome that I have observed.

There can however be other variables that need to be addressed in the older client. These fall into two completely separate categories: -

1. Skeletal anomalies
2. Psychological manifestations.

Skeletal anomalies - These problems are encountered in those who have certain types of Dyspraxia, ADD, ADHD as well as some Moebius Syndrome sufferers. The symptoms fall into two specific sections.

Firstly, there are those who have shortened long tendons such as Achilles, Hamstrings and Carpal. Because of the previous ongoing co-ordination difficulties, certain activities during the infant stages of development have not been carried out. This leads to some of the above areas of problem. As treatment progresses, the ability to carry out those movements improves, but the individual will certainly not by choice regress to those types of movements that should have been carried at that early stage of life. Part of the programme will be highly specific physical movements designed to lengthen gently those particular tendons when the individual's developmental profile dictates that it is appropriate.

The second area is in general muscle development. There are anomalies in the muscle development, not only in the facial areas, but also in many other parts of the body. Once again at the correct time, different movements or exercises will be prescribed to "normalize" muscle development.

Psychological manifestations - Whenever we have any form of physical restriction imposed upon us there is always a psychological ramification. This could effect our self-esteem or confidence, it could cause us to become conditioned away from certain activities or situations.

As the changes occur, and the confidence improves, then there is a need for ongoing counselling, in order that the potential that has been suppressed by the pre-existing restrictions can be realised. This counselling is an ongoing part of the treatment. In both of these cases the younger the client, the less the need of therapist intervention. Otherwise, as I stated at the top if this Email, everything else is the same.

I hope that this is of use to you, If you want to use any more information from the Website in your article then please do. I have included a list of available information for those who are not able to attend the Conference.

There is a possibility that I will be setting up a Moebius Bodybrushing clinic in the USA, it will depend on how many at the conference want to start treatment, but if you keep looking out on the Website I will post any information there.

Look forward to meeting you at some time in the near future

Regards, Steve Clarke"

(Steve Clarke has included an overview of his upcoming presentation at the Moebius conference, on his website - go to - http://www.bodybrushing.co.uk/overview1.htm )

Moebius and Mood Disorders

National Council on Disability Says Lack of Coherent Federal Agency Strategy Takes Toll on Disabilities Act

Study Finds Untapped Political Clout Among Americans With Disabilities

Presidential Candidates Focus On Special Education

Healing The Brain From The Inside Out

Asperger's Syndrome Went Undiagnosed For Many Years - Autism Misdiagnosis 'Ruined A Life'

Meet Paolo's two big sisters - Tara (14) and Trizha (10)

Meet Diane Rodecker, writer for 'Orange County (CA) Register

Meet Dave at Inclusion Daily Express

KEEP YOUR FORK

Room available on Return from Conference in my rental Car!

What are they teaching in school??

Who says you can't play those childhood games when you get old!!

NEW PROVERBS

New Online book - 'How To Absolutely, Positively, Totally Guarantee Your Child Will Be A Winner'

Defusing Anger - How To Help Kids Learn To Calm Themselves - And Reap The Health Benefits Later On

SpecialEdLaw.net

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