ROLL ON aims to share the everyday lives of families living with neuromuscular disorders with caseworkers and clinicians, and the parents of children who have been recently diagnosed that they are working with. It does this in order to help them gain a new perspective on living with these disabilities.
Candidly, and with maturity rare in young people, the children—between the ages of six and eighteen—share stories of bullying at school and the feelings of rejection it can cause in some children. They explain common misconceptions the able bodied community has of people with neuromuscular disabilities, and how sympathy from able bodied people may lead the disabled to feelings of victimization—a complete mischaracterization of themselves as thriving, productive individuals.
The parents featured in the video discuss what it was like to first hear from a doctor that your child will never walk or talk, and then feeling the need to treat your child like he or she does not have an illness. Parents share advice on how to handle inclusion in and outside of the classroom, as well as how to approach and work with parents when accommodations are needed for events like sleepovers and birthday parties.
ROLL ON acknowledges the reality that life can be difficult, whether it is fighting a health care system that seems to be working against you, or facing feelings of isolation, anger, or even suicide that can plague a child with disabilities.
But from diagnosis to life expectations, the parents and children featured in ROLL ON candidly share their experiences and advice on how to seek help and succeed and how to celebrate the blessings on their unique path in life.