The moment you doubt
whether you can fly,
you cease forever to be able to do it.
– Peter Pan
Driving a car. Going to college. Moving away from home. Getting a job. Managing finances. Buying a house. Whether due to physical or cultural constraints – or both – the vast majority of these typical milestones of independence are simply unachievable for the individual with Duchenne.
True, independence for individuals with Duchenne Muscular Dystrophy will likely look different from typical independence. But – just like with anyone – if a caregiver creates opportunities for the individual with Duchenne to learn and grow, they, too, can achieve internal independence. They, too, can mature into competent adults who feel valuable and important to others.
In order to help cultivate this internal independence, there are two key terms that are important to understand: self-determination and self-efficacy. Self-determination includes meeting the three psychological needs of autonomy, competence, and relatedness. Self-efficacy is one’s belief that he or she can actually achieve a specific goal.
And yet, what do all these terms of self-determination matter, if an individual doesn’t believe any of it is possible?
Self-efficacy addresses just that. It is the cornerstone to success in independence. It’s one’s belief in one’s own ability to succeed in specific situations or to succeed in a task. Efficacy is in part shaped by how you perceive other humans to be interacting with you.
It’s a slippery slope to co-dependency with Duchenne. The caregiver-child relationship can easily become enmeshed and stay enmeshed, particularly as physical abilities decline. It takes a definite decision by the caregiver to prevent co-dependency from happening. Once that decision is made, there is space for a beautiful person to blossom.
Self-efficacy can be cultivated by allowing the child to speak for him or herself, instead of another person speaking for him/her. Encourage the child to perform tasks that they can, so they can prove to themselves they are capable.
As the child gains a greater capacity for emotional regulation, encourage their work in creating an individual sense of self. Counseling and play therapy can work wonders in building a sense of self.
Give them the opportunities to prove to themselves that they can safely experience life with multiple people in their community.
There will definitely be bumps in the road to independence. The individual with Duchenne won’t welcome every opportunity for growth eagerly. There will be times that the individual thinks the task or experience asked of him or her is impossible. While he or she may not even be able to articulate why, the behaviors are speaking loudly and clearly.
When a daunting task is coupled with an underdeveloped sense of self-efficacy, some very challenging behaviors may present themselves.
A task just might seem too hard, the individual wants to escape and feels trapped. An already overstimulated sympathetic system revs up another notch and meltdowns ensue.
Behaviors are communication. When witnessing one of these tremendous meltdowns, instead of assuming the individual with Duchenne is just being obstinate, please consider that possibly they are expressing some incredibly vulnerable self-doubt.
A Little Bit of Help
Although independence in Duchenne may often look different on the outside from the way society expects, this internal independence can invoke pride in oneself and confidence in competency. Despite weakening muscles, physical independence, social-emotional independence and cognitive independence are all still achievable for the individual with Duchenne.
It will take thought, effort and productive collaboration within the nuclear family and school, but internal independence is possible to cultivate. From reflecting on what your own behavior is telling the individual about his own abilities, to creating opportunities for the individual to practice these important skills, independence for the individual with Duchenne may look different than typical independence, but it is still independence through and through.
They’ll just need a little bit of help from us.
More to Consider