New Brain Development Disorder Identified

Summary: Researchers have identified a new neurodevelopmental disorder. The study reveals the inherited disorder can produce learning difficulties and increase seizure risks. The researchers have implicated a recessive mutation in CAMK2A in this new disorder. Source: eLife. Researchers have identified a new inherited neurodevelopmental disease that causes slow growth, seizures and learning difficulties in humans. Writing in the journal eLife, the team reveals that this disease is caused by a recessive mutation in CAMK2A – […]

Looking at School Placements from Both Sides of the Table

BY JOANNE DESIMONE As the outreach coordinator for the Alliance of Private Special Education Schools of North Jersey, I help parents and district case managers find appropriate placement options for their students. As a special educator and parent of two children with disabilities, I use the knowledge I’ve acquired, sitting on both sides of the table. When parents call me for placement options, I especially lean on the experience I had with my younger son […]

Transitioning Into Summer Finding Camps for Children with Special Healthcare Needs

BY JEFFREY GIORGI AND AMELIA MULFORD Summer camp can be a profound and transformative experience for children of all ages. Camp challenges us to interact with people we don’t know, perform feats we didn’t think we were capable of, and develop a stronger sense of self-reliance. But when the very act of moving around is a labored chore, summer camp experience can become less carefree and more stress-inducing, as in the case of five-year-old James. […]

When Siblings have Intellectual and Developmental Disabilities

by Doreen Arcus She would have been 100 this year. Perhaps the most influential person with intellectual and developmental disabilities in modern America, Rosemary Kennedy changed the lives of millions. And she did it through her siblings. Born at a time when families were advised to institutionalize children with disabilities, Rosemary was instead an integral part of Kennedy family life until a prefrontal lobotomy left her incapacitated at age 23. She was particularly close to […]

JOEY JENNINGS’ STORY

What appeared to be one of the least restrictive settings for Joey – a one-person group home in the community – became the most restrictive for him, because it was most inappropriate for his complex behavioral needs. BY SUE JENNINGS OUR SON, JOEY, AGE 25, IS BIG, STRONG AND HANDSOME WITH A MISCHIEVOUS SENSE OF HUMOR, AND A DUAL DIAGNOSIS OF AUTISM AND MENTAL RETARDATION. EIGHTY PERCENT OF THE TIME, HE IS JOY TO BE […]

Joining The Fight For Human Rights

Special Olympics has found that people with intellectual disabilities are being excluded from national laws and policies in countries around the world. BY JAVIER VASQUEZ To the rest of the world, human rights are assumed and not questioned. Special Olympics fights for people with intellectual disabilities (ID) to obtain the same human rights as everyone else. Human rights are defined as universal freedoms and entitlements all human beings share, whatever their race, nationality, place of […]

Alabama’s Special Camp for Children & Adults

The impact that a Camp ASCCA experience can have on increasing confidence and the level of independence often remains long after the camp session has ended. BY GLENN ROSWAL AND DANA RICKMAN With more than 25 different activities from which to choose, Camp ASCCA is an exciting place to visit. Each activity area offers a unique experience and allows the camper to succeed on his or her own, as well as in an environment of […]

Training First Responders To Respond Bettter

“The SNAP Program makes a vital contribution to the armamentarium of best practices addressing the unique needs of special populations and their ability to thrive and participate in the community. It will become a time-honored component in the first responders’ toolkit.” – Rick Rader, MD, Medical Liaison, SNAP Program BY BRUCE GARNER Even under the best of circumstances, it is challenging to be a good parent, but when your child has special needs, it gets […]

Youth Empowerment Groups Encourage Self-Advocacy

Groups for youth and young adults may provide opportunity for building a foundation of skills to address core concepts that enable youth to have meaningful participation in the process of planning for their own futures. BY ERIN SEIGH AND LAUREN AGORATUS, M.A. Students with disabilities need to learn how to advocate for themselves in order to foster independence when transitioning to adult life. Groups that encourage the voices of youth and young adults can help […]

Improving Health Worldwide To The Most Underserved

People with intellectual disabilities face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services. BY KRISTIN HUGHES SROUR, MBA If you want to help straighten her bones, dig a hole in the ground, have your daughter stand in it and then pack it with soil. Do this every day for six hours. This was the advice […]