When it comes to Duchenne, there’s not a “milestone checklist” that proves one has achieved independence. Cultures vary, religions vary, countries vary, financial resources vary. Independence will look different for different families. And it should.
What is needed in every case, however, is an encouraging parent, caregiver, or assistant invested in the final outcome.
Independence in Your Family
In the challenging and complicated family life of Duchenne, the temptation can be great for the caregiver of an individual with Duchenne to make decisions for the individual “to make things easier” or “to go faster.” While this strategy does indeed reduce stress in the present, it can be quite detrimental for the future.
Caregivers must be willing to allow for the time commitment it takes for the individual with Duchenne to practice the skills needed for his or her independence. Caregivers must support this, even if it’s a bit more time-consuming or frustrating. The end result will definitely be worth the investment.
When encouraging independence for an individual with Duchenne, the first place to start is to identify what independence means to your family. Only when you have that answer can you start laying the groundwork to achieve future goals.
When your family is ready to begin encouraging independence, you must presume competence for your child. Presume that he or she can participate in activities. Presume that he or she can communicate. Presume that this child can be successful.
From there, children frequently benefit from adults who problem-solve creatively and collaboratively with the child. The child with Duchenne can undoubtedly achieve many of the independence goals your family values, but the path to get there will likely be a unique one.
Physical Independence
Physical independence is interacting with your environment in a way that helps you achieve your goals. Ultimately, it is the expression of social-emotional independence and cognitive independence.
Common obstacles impeding physical independence in Duchenne Muscular Dystrophy are muscle weakness, scoliosis, contractures, poor endurance, challenges with ambulation, functional limitations, and environmental barriers.
Ways to support and encourage physical independence include appropriate exercise, like swimming, adaptive sports, and assisted biking. Stretching, massage and surgery can help prevent or relieve limited range of motion and pain. Modifications in activities, acquiring mobility aids, adaptive aids, and environmental modifications will all support physical independence as well.
By acquiring a powerchair the individual can control him or herself, placing daily items at a height that can be easily accessed, ensuring there are ramps to and from places they visit, even having a support worker who willingly follows requests will all further encourage physical independence.
Again, consulting with a professional – OT, PT – to help determine which modifications and equipment will be helpful. Even consulting with an SLP can support physical independence. Recruiting the assistance of these professionals is often helpful in improving communication with caregivers, which is an essential part of physical independence.
Understanding, Compassion & Help
Independence may look very different for those with Duchenne and it may include many struggles. When that happens, all that our children with Duchenne can hope for is an adult to understand what’s going on, to show them compassion, and to reassure them that their unique style of independence is perfect just for them.
