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

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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 last 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

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.

 

Dyspraxia Resources

 

October is Dyspraxia Month. Developmental Dyspraxia also known as Developmental Coordination Disorder (DCD) , is a neurological disorder that affects fine and gross motor skills and organization. A child may have difficulty in sing scissors, riding a bike or learning and recalling information.

 

dyspraxia

Medical Sites- The following sites include information on causes, treatment, test and diagnoses of Dyspraxia:

Medical News Today
NCBI Resources
Understood
WebMD
Wikipedia

Organizations

Dyspraxia Foundation, UK
Dyspraxia Foundation, USA

 

YouTube Videos

20 Great Resources on Cystic Fibrosis

Infographic by IVS Solutions

Infographic by IVS Solutions

 

October is Cystic Fibrosis Awareness Month. According to the Center for Control Diseases (CDC), Cystic Fibrosis (CF) is a chronic, progressive and frequently fatal disease of the body’s mucus glands. CF primary affects the respiratory and digestive systems in children and young adults. In the United States, approximately 30,000  people are diagnosed with CF. 1 out of 3,200 Caucasian births and 1 out of 15,000 African American births.

Below are a number of resources on Cystic Fibrosis.

Medical Sites- The following sites contain information on symptoms, definition, causes, risk factors, test, diagnosis and treatment:

Kids Health
Mayo Clinic
Medicine Net
Medline Plus
Medscape
NIH (National Heart, Lungs and Blood Institute)
PubMed Health
Wikipedia

 

Organizations

Boomer Esiason Foundation-group of passionate, dedicated individuals who work every day to raise money, awareness, and support for the cystic fibrosis community.
Cystic Fibrosis Foundation-The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.

 

Twitter Accounts to Follow

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Cure Cystic Fibrosis
Cystic Fibrosis Kids
Cystic Fibrosis News
Cystic Fibrosis Teen
Cystic Fibrosis Trust
Cystic Fibrosis_ South Australia
Cystic Fibrosis_Western Australia
Medical News Today_ Cystic Fibrosis
Team Cystic Fibrosis

 

World Cerebral Palsy Day

world CP Day 2015

Today is World Cerebral Palsy Day, not just a way to bring awareness, but to create a movement among people with cerebral palsy, their families and the organizations that support them.

Held in over 50 countries, World Cerebral Palsy (CP) Day is an opportunity for people to take action by creating a global movement for change.

What can you do?

The goal of World CP Day is to encourage people to take action in six-key areas:

  1. Public awareness- putting an end to ignorance and the stigma it can create.
  2. Civil rights- ensuring that government officials at the local, regional, and national level will take concrete action
  3. Medical/Therapeutic- ensuring the best information for diagnoses, prevention and treatment is available.
  4. Quality of Life- ensuring that people with cerebral palsy find enjoyment and fulfillment in life.
  5. Education- helping all educators provide an education to members of the cerebral palsy community
  6. Contribution- making sure each person has the ability to contribute to society.

Oh, and don’t forget to tweet using the hashtag #WorldCPDay

 

Developmental Disability Organization of the Month

EPIC-Long Island

 

non-profit_epic

Epic Long Island is a non-profit organization originally established as the Epilepsy Foundation of Long Island, offers a broad range of services to individuals with developmental disabilities, emotional and mental health challenges and epilepsy. Services include, community and clinical services and day habilitation and residential information.

For more information, please visit Epic Long Island at: www.epicli.org