Over 30 Online Resources on Rett Syndrome

 

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So much has been written on the subject of Autism, but how much do you know about Rett Syndrome? This disorder fall under the autism spectrum disorder category due to similar traits and characteristics.

Rett Syndrome is a neuro-developmental rare disorder that affects primarily girls. Discovered by Andreas Rett who described the symptoms as wasting and slow growth. Rett Syndrome is rare and occurs in 1 out of 23,000 births. The disorder consists of four stages:
Stage 1: Generally begins between the ages of 6 and 18 months. Gross motor skills begin to slow down and stagnates
Stage 2: Between the age of 1 and 3 years, will regress and lose any skills that were previous acquired.
Stage 3: During this stage, apaxia becomes apparent. Seizures become common and gross motor skills deteriorate.
Stage 4. Loses all gross motor skills and generally uses a wheelchair.

Symptoms

  • Difficulty in coordination
  • Loss of communication skills
  • Dyspraxia
  • Severe motor disabilities
  • Abnormal hand movement
  • Breathing abnormalities
  • Cold hands and feet
  • Apraxia
Similar in Autism Characteristics include:
  • Screaming
  • Crying
  • Hyperventilation
  • Lack of eye contact
Similarities in cerebral palsy include:
  • Hypotonia
  • Gait difficulties
  • Spasticity
  • Teeth-grinding

Medical Sites

Boston Children’s Hospital
Cleveland Clinic
Mayo Clinic
MedicineNet.com
Medscape
National Institute of Neurological Disorders and Strokes
National Organization for Rare Disorder
Science Daily
WebMD
Wikipedia

Organizations and Foundations

Girl Power 2 Cure
Kate Foundation
New Jersey Rett Syndrome Association
Northwest Rett Syndrome Foundation
Rett Syndrome.org
Southeastern Rett Syndrome Alliance

Twitter

Rett Girl
Rett Syndrome GP2C
Rett Syndrome News
Rett UK

Facebook

Cure Rett
Ontario Rett Syndrome Association
Rett Syndrome of Ireland

Blogs

Grace for Rett
Jessica’s Journey with Rett Syndrome
Living with Rett Syndrome
My Silent Angel’s Fight

Teaching Strategies

ACC for Children Who Have Rett Syndrome
Multi-Model Communication Strategies
Rett Syndrome: Teacher Tools
Some Rett Syndrome Tips

You Tube Video’s

Book Review: I Am Aspien Woman

 

I Am Aspien Woman: The Unique Characteristics, Traits and Gifts of Adult Females on the Autism Spectrum.
Tania Marshall.
July, 2015.
150 Pages.
The number of articles written on Asperger’s syndrome and people living on the autism spectrum has mushroomed over the┬álast few years. Most articles and research studies focused on the typical characteristics of males, that is, until now. New evidence shows that women diagnosed with Asperger’s syndrome are quite different than their male counterparts. Females for instance are more likely able to imitate social skills and are better at masking certain traits and characteristics. As a result, many been misdiagnosed thus leading to years of depression, anxiety and psychiatric visits.
One author hoping to shed more light on the subject is Tania Marshall, a psychologist and author with extensive training and experience in neuro-developmental conditions including Asperger’s syndrome, ADHD and sensory processing disorder. Based on her professional practice experience, anecdotal evidence, and current research, Ms Marshall weaves a story of validation, self-discovery and self-awareness through a visually stunning book.
The book is full of personal stories and quotes directly from Aspien Women with added commentary from parents, former teachers and therapist. The book is divided into 3 sections. Part one describes the various characteristics and traits. Part two introduces the reader to “real-life Aspien women superhero mentors” including Dr. Temple Gradin. Each mentor describes their strengths and top tips.
The author successfully accomplishes her goal in introducing through this book, the characteristics, traits and gifts of adult females on the spectrum. Ms. Marshall’s book is an excellent book for anyone wanting to learn more about Asperger’s from the perspective of women on the spectrum. While the book on the surface seems to be intended as a form of self-discovery, I equally recommend this book to parents, educators and employers. I do believe this book is only the start of a conversation that is long over-due.

To learn more about I am Aspien Woman and Ms. Marshall’s additional resources and information, I have included the following Resources:

Amazon
Facebook Page
Tania Marshall’s Website
Aspian Girl Blog
Tania Marshall on Twitter

AUCD Annual Conference

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On November 15, 2015, the Association of University Centers on Disabilities will hold its annual conference in Washington, DC Registration is currently open! Please click on this link for more information

 

October is ADHD Awareness Month

October is National Disability Employment Awareness Month

national disability monthNational Disability Employment Awareness is recognized each October to highlight the workforce contributions of people with disabilities.

Facts:

  • Only 20 percent of the labor force with disabilities are employed.
  • 59% of the people with hearing impairments were employed.
  • 41% of people with visual disabilities were employed.

16% of people with severe disabilities work full-time.

Check out this infographic!

disability employemnt

What can you do in your organization to recognize National Disability Employment Awareness Month?

Train frontline staff on the facts

Reach out to local media

Proactively recruit people with disabilities

Review company policies and procedures

Conduct training for supervisors on understanding their role in fostering an inclusive workplace culture

Participate in a disability mentoring day

Conduct a training on disability history.