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.
So much of the typical independence we expect from adults is rooted in basic social-emotional independence. Social-emotional independence is the ability to regulate one’s own emotional state and to enjoy fulfilling interactions with other human beings.
Each culture has its own set of expected behaviors for its people. When someone strays from those norms – such as exhibiting big reactions to small problems – relationships with other humans are impacted. These behaviors can confuse peers, can appear disrespectful to adults and ultimately may invite negative interactions and even varying states of isolation.
Social-emotional independence is particularly important for the child with Duchenne because they constantly live in a chronic state of elevated stress due to the very physiology of the disease. To compound that, children with Duchenne have a higher rate of mental health diagnoses than the general population – such as OCD, autism, ODD and selective mutism.
Between these two factors, this elevated stress makes emotional regulation particularly challenging for the child with Duchenne. It’s fairly inevitable that children with Duchenne will exhibit explosive behaviors.
In the early years, many of children with DMD need a calm adult to help them through emotional co-regulation. They also need an adult to model for them ways to calm themselves and to support practice. Over time, however, the child should be able to build some aspects of independence over their own emotional lives.
Ways to encourage social-emotional independence include being mindful of the daily trauma they experience and creating a safe environment for them, allowing them the opportunity to experience different caregivers, supporting relationships both inside and outside of the disability community, talking with them about how their bodies feel, talking about their diagnosis and their future plans.
A support animal or even a family pet is also a great way for children to learn self-regulation strategies. From the touch of their fur, to the rhythm of the animal’s breath and the unfaltering affection of an animal, the companionship of an animal works wonders with encouraging independence.
The benefits of having a trusted adult in children’s lives – in addition to parents – are innumerable. Connections with other trusted adults become increasingly valuable as the child gets older and needs help with emotions and situations they don’t want to discuss with mom and dad.
Cognitive independence is the ability of the child to make decisions by him or herself. This can be particularly challenging for the child with Duchenne as inflexible thinking, and a strong preference for routine and predictability may override the need for a new plan.
There are multiple ways to support cognitive independence. It may be as simple as which path the child wants to take in his or her powerchair, what clothes they want to wear, or even choosing what food they want to eat. Quite often, simply allowing the individual with Duchenne the opportunity to think and to speak for themselves – instead of an adult answering for him or her – can be a game changer.
While it’s important to sow the seeds for cognitive independence from an early age, practice must be encouraged when the individual with Duchenne feels emotionally secure and regulated. The human brain is simply incapable of experiencing big feelings and thinking logically at the same time. It may take a bit of time for mastery of emotional self-regulation before significant progress can be made towards cognitive independence, but that is ok and definitely to be expected.
For a muscle wasting disease like DMD, cognitive independence is perhaps even more vital to self-determination than those without DMD. Not only do individuals with Duchenne need to make their own decisions in life, but they’ve also got to communicate that effectively with their caregivers and personal aides.
Another reason cognitive independence is so vital to those with Duchenne is the weighty medical decisions they are expected to make as young adults. Far too often, teens with Duchenne become a legal adult at age 18 and are quite unprepared to make medical decisions – and other adult decisions – on their own.
While there is a big difference for the law between the 18th birthday and the day before that, cognitive independence doesn’t work that way. Cognitive independence follows a very personal developmental path and must be practiced and encouraged for years before that 18th birthday.
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 and 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, 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.
Acquiring a powerchair the individual can control by him or herself, placing daily items at a height can be easily accessed, ensuring there are ramps to and from places they visit, even having a support worker who willing 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 and 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.
More to Consider