It is not what you do for your children, but what you have taught them to do
for themselves that will make them successful human beings.
– Ann Landers
Self-determination and Duchenne
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.
While many families and individuals with Duchenne understandably grieve these rites of passage, those milestones aren’t the only things that define independence. In fact, they’re not even the most important things that define independence.
Those typical milestones are really an external manifestation of internal maturity, strength and independence. At its core, independence is about a person’s internal growth. And that is definitely accessible to all humans, even to those 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.
The first term to understand through this different lens of independence is autonomy. Autonomy means that you have free will and that you own your actions and values. No one – not parents, caregivers, or physicians – is forcing you to do something you disagree with.
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 “faster.” A crucial component of autonomy is the caregivers’ willingness to relinquish control and to allow for the extra time needed.
After that, autonomy can be introduced and encouraged, no matter what age of the individual with Duchenne. Involve the individual with Duchenne in decisions about their own medical procedures or interventions. Include them in decisions about their physical therapy schedule and other therapies. Ask them how you can help make their medical equipment more comfortable or tolerable.
For very young children with Duchenne, building autonomy can be as simple as involving them in decisions about their own appearance and encouraging them to choose what they want to wear.
Since individuals with Duchenne do rely on others so much for physical assistance, autonomy can be a challenging concept to instill. It’s important to understand, however, that autonomy begins in forming one’s own values, wishes and goals. Then another person – like a caregiver or personal attendant – can step in to help execute the plans.
The idea of competence naturally flows from autonomy. Competence means to feel like we’ve done a good job at something. People need to gain mastery of tasks and learn different skills. They need to feel challenged, like they’re contributing to a greater cause and being effective.
Competence can be encouraged and cultivated through simple daily tasks. Create opportunities for the individual with Duchenne to complete chores around the house. Create the time and accessibility for the individual to participate in one’s own self-care.
Make choices to help them feel successful at school. Ensure that IEP’s and special education classes are in place. Check and double-check that the teachers and staff know what they can and can’t expect the child to do.
Lastly, individuals with Duchenne need an avenue for competition. There is a reason that online gaming is so popular in our Duchenne community. It’s because individuals with Duchenne can excel in gaming and truly challenge someone else’s skills. Whatever satisfies the competitive need for your loved one with Duchenne, offer him or her unending support and encouragement.
The last component of self-determination is relatedness. Relatedness conveys the need of humans to experience a sense of attachment and connection to other people. It includes knowing how you fit into your community, knowing that you are valued for you, and knowing that you can contribute to the betterment of your community.
Just as there are multiple layers to a community, there are multiple ways to connect with other humans.
At home, make it a priority to have some sort of family time on a regular basis. Whether it’s family dinner, family game night or other fun traditions, encourage all family members to get involved in family activities.
Another vital part of being connected to the community is in helping others. Volunteering can be a fantastic way to meet new people, to give back and to gain a strong sense of your contribution to the community you live in.
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