Even freshman orientation is more complicated for students with muscle diseases — and their parents
posted on July 1, 2009 - 2:52pm
Imagine 800 middle school students arriving for freshman orientation at Trabuco Hills High School in Southern California.
All students are taking their first steps onto a campus four times the size of their current school, complete with swimming pool, tennis courts, a school store, vending machines and a gym with real wood flooring.
posted on January 1, 2009 - 3:43pm
Ms. Wheelchair Michigan spreads message of self-advocacy and inclusion
posted on March 1, 2008 - 3:26pm
Every summer since 1955, kids have been granted the opportunity to escape the repetitious hardships of reality and relax among peers at one of MDA’s summer camps, which now number more than 90. To make it even better, campers are able to attend at no cost to themselves or their families.
Helping children understand their diagnoses
posted on July 1, 2006 - 2:23pm
Joanne Wechsler remembers when she first formally told her preschool-age son Adam that he “had muscular dystrophy.”
“I don’t have that!” he protested loudly. “I don’t have muscular dystrophy!”
posted on January 1, 2005 - 4:36pm
Psychology professor Rhoda Olkin hesitated before she requested her teenage son to take out the trash.
“I was reluctant, at first, to ask him because it is physically hard for me. But then I realized that teenage boys all across America are taking out the kitchen garbage and I got over it,” said Olkin, who had polio and is a national expert on parents with disabilities.
posted on March 1, 2005 - 11:20am
Miranda Jackson’s first signs of muscle weakness came in first grade. A bright youngster with an engaging smile, she struggled not only with lack of coordination from myotonic muscular dystrophy (MMD), but also with pain from a form of juvenile arthritis and depression from bipolar disorder.
posted on March 1, 2005 - 11:24am
When school and family are deadlocked over an IEP, the recently updated Individuals with Disabilities Education Act requires mediation be tried before calling a due process hearing. The IDEA is the law that governs special education. (See "A New IDEA.")
A co-op model of care for adult children
posted on December 31, 2009 - 1:00am
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s.
Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....
A GPS for students with disabilities
posted on March 27, 2010 - 4:55pm
MDA's Public WebEx , held on February 24, 2010, featured panelists Chris Rosa (Becker muscular dystrophy); L. Vance Taylor (limb-girdle muscular dystrophy) and Angela Wrigglesworth (spinal muscular atrophy) speaking about going to college with a neuromuscular disease.
Visit MDA's School Advocacy Resources page to see:
posted on March 31, 2010 - 10:20pm
Jacob Gapko has compiled the first-ever bibliography of books about young people with muscular dystrophy, with help from a Carnegie-Whitney Award from the American Library Association.
Click on the title to access the bibliography:
Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography
