It’s rather clear that our kids with Duchenne have many needs. They need powerchairs and orthotics, they need ramps and adaptive clothing, they need school aides and BiPAP machines. But their needs don’t stop there.
The brain physiology of an individual with Duchenne can differ significantly from those without Duchenne. Individuals with Duchenne often face challenges with anxiety and depression, social cues and communication, lack of control in their lives and bodies, extreme emotional outbursts, self-identity and independence. The lack of dystrophin permeates their brains, emotions, belief in self-efficacy and even integration with other humans.
That means that our kids with Duchenne also need friends. They need to be included in social events. They need to pursue their passions and their joy. They need to see role models with Duchenne and have an expectation of a future. But their needs don’t stop there.
At the core, our kids with Duchenne need adults to guide them. They need patience from those adults, they need wisdom and rational thinking. They need understanding, compassion and determination. They need creativity, hope and steadfastness from the adults in their lives.
Kids with Duchenne don’t need just handicap parking spaces, or just accessible ramps. They don’t need just a Hoyer lift or just an accessible bathroom. No, our kids with Duchenne need more than that because the disease encompasses more than that. So much more.
Some of the key focuses of an adult of an individual with Duchenne should be to help calm that nervous system, encourage collaborative communication instead of authoritarian, encourage inclusion and independence, and ensure that the place they spend most of their hours as a child – the school setting – includes all these components as well.
These keys are fundamental in creating an atmosphere in which children and individuals with Duchenne can regulate emotions, constructively communicate, nurture a sense of competency and independence.
- The Foundation
- Understanding DMD Physiology
- Calming Their Nervous System – from the Inside
- Calming Their Nervous System – from the Outside
- Include Them – coming soon
- Customize Their School Day – coming soon
- Encourage Their Independence